The stress of new doctors

[UnXmas]

This might not be an appropriate thread for this forum; the issues aren't really specific to Crohn's. But I've got a lot out of lurking and beginning to post here these past few days - I like the atmosphere here.

I've only recently been diagnosed but have been ill for a long time, with other illness before this one as well. I had some bad experiences when I started getting ill - doctors telling me I was causing my symptoms through stress and when the stomach issues started they accused me (it felt like an accusation) of anorexia because I was losing weight. (It might not have been so bad if they viewed anorexia as the mental illness which it is - my doctors seemed to view it as something young women put on to get medical attention.)

But then I got tested and was told my stomach was inflamed. I saw a new consultant recently who accepted my illness was physical and not something I was doing to myself or making up.

I have to have follow ups to further assess the rest of my digestive system and monitor treatment, etc. I got a letter in the post this morning informing me that the consultant I saw previously has transfered me to another specialist - the reason being this one is more specialised in this type of illness. I get why they think someone else is better equipped to be my consultant, though I wish I'd been asked about it first - when I left the last appointment I was told I'd be followed up with the same doctor. They changed their minds subsequently, obviously, and it just feels like it's all happening without my say so or even my knowledge sometimes.

My instinctive reaction is to cancel the appointment, simply because I cannot face the stress of seeing another potentially bad doctor. I feel like he may take the diagnosis away from me - e.g. he may say just because I have some inflammation, doesn't mean I should have lost this much weight, and assume I must also be anorexic or faking or whatever. I'm worried that if I have more tests done it may result in them switching back to suspecting me, depending on the results. I realise that sounds paranoid and unlikely, but the number of doctors who took that attitude has taught me otherwise. I know anorexia and hyperchondria must have been written about on my medical record, so the chances of a doctor being suspicious about me will be increased when they read that and it becomes a vicous cycle.

I also hate the tests where they put their finger up your bottom. They seem to do this as routine for me (I've had hemmorhoids and rectal problems, not as part of Crohn's directly but as a result of all the strain put on the rectum by the Crohn's symptoms). I had a history of abuse and no matter how much I hate being a cliche, it's left me with issues. I don't want to be explaining this to another new doctor, not knowing what his reaction will be. I'm never assertive enough to refuse the tests when they tell me they want to do them - and I realise it's useful to get the tests done, though it's not like it's a life-saving procedure. The doctors assume - naturually enough I suppose - that I'm a normal person who feels normally about their body... and I'm not and I don't know how to answer their questions.

I thought at least I'd just be seeing the consultant that I felt comfortable with. I can't help wondering what I'm going to gain from going to see another specialist. It's not like they're going to be able to cure me. If I had nothing to lose by going to the appointment, that would be one thing. But to me it seems I'm risking a load of embarrassment, stress and misunderstanding, and I risk a doctor getting angry with me or labeling me insane.

Basically I don't know whether to go to the appointment or not. I know no one can decide for me, and I know the sensible advice is that I need to go because you can't manage a chronic health problem without medical help. But I would like to know if am I the only one who finds it this stressful? I realise I've had unlucky experiences - perhaps exceptionally unlucky - but has ANYONE felt in a similar position to this?

Do you ever refuse tests and how do you bring yourself to explain something like this to a new doctor? If you instinctively feel uncomfortable with a doctor can you just say you don't want to carry on with the consultation? Would doing that - expecting to be able to choose who I see (I'm in the UK so it's all on the NHS) - just give the medical profession more reason to view me as a "difficult" patient?

Sorry for the long post. My mind is going overtime now, it helped to write all my thoughts down even if I don't get replies, so thanks for allowing me the space to do that.

 

[chrisnsteph1022]

The only doctor that did a manual rectal exam was my PCP before I was diagnosed. I've seen 3 GIs over the past 10 years and none have done that to me. I would flat out refuse that. There's no reason for it, IMO

 

[UnXmas]

The only doctor that did a manual rectal exam was my PCP before I was diagnosed. I've seen 3 GIs over the past 10 years and none have done that to me. I would flat out refuse that. There's no reason for it, IMO

I did have a lot of specifically rectal problems, so there is a reason why they're doing it. I've had hemmorhoids internal and external, and repeated rectal prolapses. They can check for internal problems and I suppose if I want rectal problems diagnosed and treated they have to be able to assess it.

It's just they don't get how emotionally stressful it is for me. I think when they are in professional mode, they don't think of you as a person just as a clinical entity. And then it's even less likely to occur to them that what they're assessing might be associated with traumatic feelings, that just doesn't cross their minds. That's why it doesn't even seem right for me to bring it up first: I'd feel awful just blurting out all my issues and problems when it's the last things they'll be expecting. They'd see me as even more of a nutcase then.

 

[long time crohnie]

Having those rectal exams are VERY uncomfortable if u have had any rectal issues. I am sure its even more horrible you have a hx of abuse. If there is one thing Ive learned thru the yrs w different drs is you need to be assertive re this issue. Ask if it is truly nessessary due to severe pain and yes, past abuse. Going to this new dr may be good if he/she specializes in IBD. I hear your pain and frustration. I too have been accused of depression or drug seeking. Keep strong, keep writing and reading. It helps

 

[Ihurt]

You are not alone. I have been chronically ill with different health issues for 9 years now. I have seen sooo many doctors in the last 9 years I have lost count.

One thing I will say is I also went through that whole issues where I was told all my health issues were caused by stress and that it was all psychological. Finally when I saw the right doctors who actually diagnosed me then it got a little better " and I mean only a little". I still had ignorant doctors. I went to Mayo clinic which was the biggest waste of money and time! It took me awhile but I did finally find a few doctors who were actually very knowledgable. One thing I have noticed is that a lot of doctors do not like to deal with chronic illness of any sort. It is time consuming and they really do not know much about chronic illnesses. Most doctors like to just be able to write you a prescription and send ya on your way, they do not like complicated patients with complicated disease( at least that is what I have experineced with western med doctors).

My suggestion to you is this. When you go to see a new doctor, do NOT bring up your past with the abuse. If you do, then they are going to zero in on that, at least that is what I think. I mean they are so quick to tell people with chronic illness that it is all stress anyhow. If you even mention some sort of abuse or stress in your life, they will lay the blame there. You see it is easier for them to blame it on something ( even if it is not true), than to admit they do not know! Crohns is a chronic illness and unfortunately the doctors are not that knowledgable when it comes to these diseases. They do not even know what the cause is. When you go to the doctor you have to be assertive. One thing to remember is " You are paying them for a service, not the other way around". They cannot make you do anything you do not want. I have refused many tests in my time. Usually because I just thought it was not nessasary and a waste of money, or because I had already had the test done. A lot of times when you go to a new doctor they want you to re-do the tests even though you have already had one recently. Well that is where you have to put your foot down.Tell them you cannot afford it! Believe me, it is not about them not trusting your previous test results, it is about them making money! You have to weigh the options in your mind. I mean if you think you could benefit from a test, then go for it. But if your gut is telling you No, not to do it, then you kindly decline and explain to the doctor why you are not willing to do it.

You are not alone in this though. It took me 6 years to find 3 good doctors that I have. My gastro that I use to see moved out of state. I was crushed by that since he was such a good doctor. I am now seeing another guy there and he is really nice. He is reserved when it comes to doing tests though, which I knid of like. But then again, there is a time when you have to take a look and see what is going on too. Be your own judge in terms of what you think you have to do. It is your body and nobody knows it better than you!

Try not to stress. Sometimes it takes getting 2,3 4 sometimes more opinions until you find the right doctor. You will, dont worry.

 

[UnXmas]

Thankyou for the replies.

Ihurt: I'm sorry you've had similar experiences. The strange thing is I am in the UK, where our health care is free. Doctors don't get paid according to the number of tests they do - in fact, they're more likely to try to refrain from wasting resources on tests and procedures and treatments if they suspect they won't be necessary. It's ironic then that it seems in both systems of healthcare there is a tendency to see patients' problems as psychological when they are not and to accuse them of wanting medical attention for the wrong reasons.

My suggestion to you is this. When you go to see a new doctor, do NOT bring up your past with the abuse. If you do, then they are going to zero in on that, at least that is what I think. I mean they are so quick to tell people with chronic illness that it is all stress anyhow. If you even mention some sort of abuse or stress in your life, they will lay the blame there.

I think you are exactly right here. I had been thinking of how awful I would feel talking about it, but you're right it will also just give them an extra reason to focus on my problems as mental. The worst is gyneacology appointments: they expect you just to be able to talk about your whole sexual history and sex life and I hated. They seem to assume everyone has happy relationships, always heterosexual, always within what they've defined as "normal." If you deviate in any way just the language they use and the questions they ask make you feel like your excluded from the human experience. Sometimes my bowel problems overlap with this - because I had a rectal prolapse and pelvic prolapse is defined as a gynecological condition when it happens in women. One more reason why I'm dreading a new doctor - even if it's for IBD with my bowel complications there's a chance they'll start asking about sexual problems - it's happened to me before.

I'm glad you've found good doctors. I'm trying not to let some bad ones tarnish my views of doctors in general, but it's hard because some of these attitudes are most likely a result of the culture in which they work and the ways in which they are trained to think about various problems. Some are just individual doctors being inexcusable, but even then there's no way to know in advance whether the one you're about to see will be decent or not.

I think I just have to get better at saying no when I know something's not going to be useful for me. I do want to get properly diagnosed and treated, but I don't have to go through whatever they feel like putting me through to get there.

 

[Ihurt]

Yeah, I think with chronic illness, doctors tend to always want to have a blame to fall back on( like it is mental or stress or from an experience you had in the past etc..) A lot of doctors for some reason do not want to come right out and say " I do not really know". It is an ego thing for sure. They would rather blame it on something else, rather anything else opposed to saying they have no clue.

When you go to the gyne or any doctor, they really do not need to know if you were abused or not. That is very personal and if you do not feel comfortable talking about it, then they do not need to know. All they need to know is what pain you are having or what physical problem you have going on that they can help you with that is in their area of expertise.

I myself have not even had any kind of abuse happen to me. But I will say that I have had so many doctor ask me this question. I went to the ER a few years back with my husband due to having a urinary infection. The ER doctor, well he asked my husband to leave the room so he could ask me some questions. I told the doctor there was no need for my husband to leave the room, that he could ask me whatever he wanted in front of my husband. Well he did not like that answer so he put up a big fuss. Well finally my husband decided to leave the room just to satisfy this doctor and get him to shut up and do his job. This doctor then had the nerve to ask me if my husband was abusing me or cheating on me!!! I was totalll not expecting that. I even asked the doctor, why would he even suggest such a thing. He told me that this was protocol. I was like, " you ask all your patients if their spouses cheat on them???" He said well usually ones with urogenital issues. I asked him since when was a urinary tract infection a genital issue??? Anyhow, long story short, I was appauled at this doctor for even going there. There was nothing to even give this guy cause to ask me such a question. Some Doctors can be very ignorant unfortunately.

I also am trying to figure out what is wrong with me as well. It is important to figure out what is going on, that is true. But you are in control at all times. Doctors can suggest tests to you, but in the end, it is all up to you. There is no reason any doctor should have to put their fingers up your rear everytime you go there. I mean unless you are having an issue that is. I mean if you are having an issue or some pain or a problem in that area, then sometimes they have to look. I use to see a uro doc for my IC( interstitial cystitis), which is a bladder disease. He always wanted to do a gyne exam on me. I mean I was in there every couple months. After about the third time, I told him he did not need to do a pelvic on me, that I go to the gyne for that. I mean if you feel uncomfortable with something all you have to say is no that you do not feel comfortable with it.

As far as tests, if the doctor suggests a test to you and you do not feel comfortable going through it, then explain to the doctor that you would rather not do that test. Then you can ask if there is any other alternative tests that you can do to help you get a diagnosis that you would feel more comfortable doing.


Hang in there, I know it is hard going. You will find a good doctor, they are out there, sometimes it just takes time.

Thankyou for the replies.

Ihurt: I'm sorry you've had similar experiences. The strange thing is I am in the UK, where our health care is free. Doctors don't get paid according to the number of tests they do - in fact, they're more likely to try to refrain from wasting resources on tests and procedures and treatments if they suspect they won't be necessary. It's ironic then that it seems in both systems of healthcare there is a tendency to see patients' problems as psychological when they are not and to accuse them of wanting medical attention for the wrong reasons.



I think you are exactly right here. I had been thinking of how awful I would feel talking about it, but you're right it will also just give them an extra reason to focus on my problems as mental. The worst is gyneacology appointments: they expect you just to be able to talk about your whole sexual history and sex life and I hated. They seem to assume everyone has happy relationships, always heterosexual, always within what they've defined as "normal." If you deviate in any way just the language they use and the questions they ask make you feel like your excluded from the human experience. Sometimes my bowel problems overlap with this - because I had a rectal prolapse and pelvic prolapse is defined as a gynecological condition when it happens in women. One more reason why I'm dreading a new doctor - even if it's for IBD with my bowel complications there's a chance they'll start asking about sexual problems - it's happened to me before.

I'm glad you've found good doctors. I'm trying not to let some bad ones tarnish my views of doctors in general, but it's hard because some of these attitudes are most likely a result of the culture in which they work and the ways in which they are trained to think about various problems. Some are just individual doctors being inexcusable, but even then there's no way to know in advance whether the one you're about to see will be decent or not.

I think I just have to get better at saying no when I know something's not going to be useful for me. I do want to get properly diagnosed and treated, but I don't have to go through whatever they feel like putting me through to get there.

 

[MoRymes]

Hi UnXmas,

It's very interesting to hear this perspective on the UK health system. I know for a long time I've always admired (and stared at with wide, longing eyes) the system there relative to the system here in the US. I think your story has shined a light on something that I hadn't considered and something that I do take for granted here, which is my ability to very easily "shop around" for a doctor. I can tell you that if any doctor even gave me the type of vibe that you described, I wouldn't return to them ever again. I would simply find another doctor, preferably one who I can find some feedback on whether through word-of-mouth or online. It sounds to me like it's not so simple for you guys (or am I misunderstanding?)

I think, generally speaking, that having an a polite but assertive attitude is usually the best thing to do in these types of situations. You don't want to put the other guy on the defensive, but you do want to make clear your own boundaries. I think you're right that sometimes doctors do view us as "clinical entities" and so it's our job to remind them that we're more than that. If you don't want to go into details about anything, make that clear. If you're uncomfortable getting a certain test done, make that clear. Set your boundaries calmly but firmly, and request that he or she work within them.

If this doctor is truly an expert in IBD, I'd be very surprised if they brush it off entirely to stress or anything psychological. I know in my case anxiety can certainly exacerbate my symptoms, but it absolutely is not the cause -- I'd really have to question how much of an expert this person is if this is their implication.

I don't think you should feel bad about being a "difficult" patient. If you feel in a certain situation that the best way to advocate for your own health is by being difficult then you should absolutely be as difficult as you need to be. This is your health and your life. They are doing their job.

With all of that said, I want you to know that I do feel your anxiety. I don't have anxiety for this type of a situation, but I do have very high levels of anxiety about other things. The way you describe your anxiety (instinctively just wanting to call off your appointment), sounds very similar to how I instinctively react to mine as well.

I'm glad you wrote all your thoughts down to us. It helps me to do that as well. I really hope you're able to develop a good relationship with your doctors, whether you end up choosing to go through with this one or wait for another one. From there, I hope you're able to work with them to create the best possible treatment plan that works for you.

Praying for you. Keep us updated how things go.

Mo

 

[UnXmas]

Thankyou again to everyone who's taken the time to reply. :hug:

Ihurt: I think you're right on that doctors use psychological explanations as a way to avoid facing up to admitting they don't know. I think they also must be trained in some way to assume that when the physical cause is not standard, then a psychological cause is the default answer.

Your story about being questioned about relationship problems when the issue was a UI is very familiar. When I was only a teenager, I was admitted with abdominal pain - I had an inflamed appendix. Because my records showed I was in contact with social services (i.e. pointing out to everyone I came from a troubled background) the hospital arranged for me to have a gynae exam to check for signs of abuse. They didn't tell me that's what they were doing. I found out years later when I got hold of my medical records that.

There is no reason any doctor should have to put their fingers up your rear everytime you go there. I mean unless you are having an issue that is.

I do have a lot of rectal problems though.

I think they're telling the truth when they say it's "protocol"! When I asked one doctor once why he was asking so many questions about my personal life, his explanation was that physical and mental/social wellbeing are so connected and doctors have a duty to take care of both. One problem for me is that my symptoms have never correlated with stress. I also wonder if I came out and told the doctor - hey, I'm having all these issues in my life - would he actually think it part of his job to help me?! If a patient said they were in debt for example, their doctor wouldn't help them out, he'd wonder what on earth they were telling him for!

MoRymes: Thanks so much for writing. I ended up writing a lot here on the health system - of course feel free to skip my boring ramblings!

I do appreciate the UK health system for being basically free to everyone. (Paid for through taxes). It means you don't have to worry about restricting your use of it at all, which is an infinite relief. If I lived in the US I'm sure I'd be bankrupt! There are sone costs here: most people have to pay something for prescriptions, for travel costs to hospital, and of course if you're sick off work you miss out financially, but that's nothing compared to getting all your consultations and tests and much of the treatment for free.

There is a private system as well. Those with the money can pay for healthcare (which means choice of doctor/hospital, shorter waiting lists and maybe nicer hospitals). Some people also buy health insurance. I looked into that, but basically insurance only covers healthy people. If you have pre-existing conditions it's just not possible.

In theory using the free NHS system you are allowed some choice over which doctor you see. Sometimes you'll be offered a choice between the local departments/specialists in your area. If you're unhappy with a doctor, you are allowed to ask your GP to be referred for one "second opinion." Everything goes through your GP (General Practitioner). As well as treating minor everyday health complaints, they're a gatekeeper - they decide if you need to see a consultant. Then the consultant is gatekeeper to any tests.

How much choice you get is very much dependent on the area you live in. And of course sometimes two opinions isn't enough!


I have definitely been characterised as a difficult patient. I never wanted to be that kind of person. If I hadn't been ill I wouldn't be in this position. And then the only alternative they left me was to accept being pegged as a mentally ill hypochondriac. I couldn't accept that, but by standing up and disagreeing with them I just reinforced the very image I was trying to get rid of. It took a long time before my condition declined and it was easier to see there were things wrong. Just recently Crohn's was added to that thanks to more testing. But it's not ended the risk of accusations as it doesn't explain the symptoms that arise from conditions other than Crohn's, and I'm sure that to some doctors' minds the level of severity at which they've assessed me as having it does not justify my weight loss and level of symptoms.

I really hope you're able to develop a good relationship with your doctors, whether you end up choosing to go through with this one or wait for another one.

The doctor who deals with my rectal problems is a good one. That's the only reason I've been tolerating the rectal examinations so far.
Both the gynae and rectal issues seem to overlap with various other conditions, so I never know if a particular specialist is going to bring them up in a consultation. I've pretty much decided to pass up on the latest new appointment, I just can't face it right now. If that means I miss out then I'll accept I made my choice. I feel better having made the decision.

Sorry for the enormous posting. It really does help me to write it all down whether it gets read or not. :heart:

 

[MoRymes]

Don't apologize for the enormous post. I enjoyed reading it and did not skip any of your ramblings Honestly, I'm going through a huge anxiety in my life currently, which is more related to dealing with these symptoms at work, so I absolutely do feel your struggle even if it's not directly related.

Do you have freedom of choosing your GP? If they aren't advocating enough for you, if possible, find another who will. It may take multiple tries to find one who works for you, but that sounds like it could really make a difference.

I'm sorry that the system has labeled you a difficult patient and is not giving you as much attention as you need and deserve to deal with this issue. I can only imagine how frustrating that is. Do you have family members or friends who you can take with you to your appointments that can help support you? Obviously have them wait outside during rectal examinations and such, but when you're sitting and talking to your doctor, they can offer their support that you really are going through a lot of negative physical symptoms. Plus, it may be easier to deal with the anxiety of a new doctor if you have someone there with you.

I know what you mean that it feels better once the decision is made. I'm actually halfway ready to quit my job because I'm finding it so hard to deal with my symptoms at work. I know quitting my job will bring in its own slew of problems, but I really think I'll feel better if I just do it. It will decrease so much anxiety that I'm currently going through. *sigh*

 

[UnXmas]

Sorry to hear you've got difficulties too. Have you posted about them on this forum somewhere? Edit: just saw your thread, I'll come back and read it soon. xx

I'm currently off work - hence I have a lot of time to post. Sometimes before work, or before I go out anywhere really, I'd wonder how I was going to make it through the day, but then I'd get going and it would be ok and I'd wonder what I was worrying about. But there are also times where it's just not possible to keep it up.

Is it the embarrassing aspect of the illness that's making work a problem? I used to suffer terribly from embarrassment but I seemed to adjust as I grew up. It still humilates me if I have an embarrassing incident in front of other people, but I don't dwell on it after or worry before hand about what might happen, which makes it manageable.

I have a GP who is quite supportive. Even if she takes me seriously though, I think consultants are always going to consider themselves superior to GPs and if they have a different opinion of the patient they'll stick with their own view.

There has to be a chaperone present for examinations, so if you don't have a family member they get a nurse to come in. It means you can be assured the doctor won't do anything inappropriate - not that the vast majority would ever do anything like that anyway - but it doesn't prevent the feelings or memories from coming up. When it comes to the possibility that a doctor will grill you on your personal life, I think I actually do better without a relative present. I'd be worried they'd volunteer information about the problems I have. Because I do have a lot of non-medical problems. I just have physical problems too. If a doctor asks me if I'm unhappy with other things in my life, the honest answer would be yes. But if I say that, they'll immediately latch onto it as the cause of my physical symptoms, which would be incorrect. I can never bring myself to lie so I usually just say I don't want to talk about whatever, which they probably take as a sign I have problems anyway.

I had unexplained osteoporosis and problems with my bones since I was a child. Then I developed a lot of rectal and bladder problems, delayed gastric emptying, and hormone and gyneacological problems. It seems to be suspicious that I can have so many health problems that are not obviously connected in any way. I think that's why I'm particularly vulnerable to being suspected of hypochondria. There's a psychiatric condition I read about that claims if a person is ill a lot as a child she is likely to learn to use illness as a way of getting attention or expressing emotions. I suppose my history means it looks like I could fit that box.

 

[MoRymes]

That's really good that you have developed a positive relationship with your GP. It's unfortunate that consultants don't take the GP's opinion more into consideration. I mean, I know the consultant has more experience in their specialty, but the GP knows the patient much better on a personal level.

It sounds like a really tough situation overall. One of the issues, it seems, is just being able to find a good GI. Are you able to contact the original GI that you saw by phone or email? I know you mentioned you felt a bit of a connection with them. Maybe you could speak to them on the phone and express some of your concerns about seeing this other doctor? If they vouch for the other doctor, it may decrease the anxiety of going to an appointment. Also, do you know if there's any forum for unbiased reviews of doctors for you guys? In the US, for example, there are a few sites (e.g. Angies List, MDReviews) that let patients provide feedback of their experiences. That's actually how I found my GI. I looked for the highest ranked GI within reasonable driving distance of where I live.

I really hope the next doctor you see can look past all of the psychological stuff and help you identify all of the issues and present a plan for addressing them.

Thanks for the kind words about my work issues. Please feel free to not answer these questions if you don't want to. I'm just curious. What type of environment did you work in? Are you currently on medical leave, or just taking a break from working in general until you can get your health under control? That's something I've really been considering. Leaving work for 3-6 months, trying to get my health under control, and then finding a different environment where it would be easier to deal with being sick. But I think there's quite a bit of grass-is-always-greener thinking with that, and all work environments will present their own challenges.

 

[UnXmas]

I'm sure there must be sites reviewing doctors, I'll have a search. I don't think I can contact the consultant I saw before - the letter I got said they were referring me on to someone else, and I presume they wouldn't have done that if they wanted to see me again.

I don't know how long I'll be off work for. There were problems beyond my health that all sort of came together at the same time (I was doing academic research and there were problems getting funding - just a result of the economy). I could have tried harder to secure funding from somewhere else or find something else, but I just felt ready to have break and was lucky enough to be able to do so.

One thing I would say is be cautious about taking a break with the aim of getting your health under control. I delayed going to university for a year because I wanted to get my health sorted first. I wanted to begin uni as a fresh start. I didn't expect to be cured, but I did think I would get my symptoms under control and get properly diagnosed and have doctors on my side. I wanted to go to uni knowing I could truthfully explain to people (or just to myself really) that there was a reason why I couldn't be quite like everyone else - why I'd have less energy, struggle with eating, need to be near the bathroom, etc.
Well a year went by and despite trying to get somewhere with doctors, that just didn't happen. My symptoms just got worse, and I was no further forward with understanding all the things that were wrong. So I went to uni anyway, and that turned out to be the best decision - I could manage.

I had to let go of the idea that I could control my illness - or control whether I got diagnosed or not. I could set a goal to get my health under control, but it just wouldn't happen. Unless you know your illness is going through a flair up, for example, and that it's likely to improve, or you have a good idea that you'll be getting a treatment that will help soon (e.g. taking time off for a specific surgery), it's difficult to have that ability to predict when things may improve.

I do think it sounds like a good idea to think about different work environments, and perhaps find something that is more suited to your current problems or try to find ways of making your current work environment more comfortable for you. And it's different if you're illness is making work impossible or is physically too much and then of course you need to take time off. But dealing with on-going, unknown illness, it's better not to put things off thinking there'll be a time when they're better. Hopefully things will improve, symptoms will settle down - it's not impossible! - but we can't always count on that!

 

[MoRymes]

Thank you for the kind and wise words, and apologies for not replying until now. We've actually had no power all week due to the hurricane.

How is everything going with you? Any updates on the doctor situation or your symptoms?

It's interesting that you worked in academic research -- this is something else we have in common. Up until 2 months ago I was a student in biomedical research. Actually, when I was referring to leaving this job for another environment, I was thinking about going back into the lab. It was a good environment overall for handling my symptoms since the work is very independent. Also, I was thinking of focusing on GI-related research, maybe IBD, or just autoimmunity in general, which would add that personal element to my work.

I had my first colonoscopy on Friday and was diagnosed with Crohn's Colitis in the Ileum and put on Asacol. So far, I haven't noticed much of a difference. The pain has subsided a bit, but that happened before I began the medicine. I am relieved to have a diagnosis because my GI feels confident that this is very manageable, and that we have multiple options if the Asacol doesn't work out. Also, I've had to deal with implications from some family members that the issue is "in my head," so this almost feels like a validation. I guess only time will tell how things go, but I'm feeling cautiously optimistic that this is the beginning of an upward trend.

Hope you are doing well.

 

[UnXmas]

Hi, thanks for checking in. I hope you've been spared the worst of the hurricane. I've been watching it on the news and feel awful for those affected. I keep wondering how on earth people with medical conditions in particular - and those in hospital! - would cope with all the disruption, having to evacuate.

I'm replying and posting a lot, I know. It's a combination of feeling uncharacteristically talkative from being on pred and having too much time on my hands. I know not everyone's here posting all the time like me!

My symptoms have improved on prednisone. I posted a lot in the treatment/pred forum. I have an appointment with my GP in a couple of weeks to find out what's next, and then I'll make a final decision on whether to risk a new specialist. Some of my other health conditions are taking priority at the moment, and I have a series of appointments in December regarding those so it does feel like progress, of a kind.

My academic research could get kind of isolating. I'd worry at times it was so unsocial, and then whenever I'd have a meeting, conference, or tutoring I'd be suffering from symptoms and want to be by myself again. I hate how this illness makes me someone other than who I would otherwise be.


Congratulations on being diagnosed! Perhaps things will get easier from here, both in getting treatment and in being taken seriously. It's good to see someone getting some answers, at least. My own diagnoses took so long that by the time I got them I found it hard to believe (and I still am waiting on confirmation of some), and I'm so paranoid about the "all in your head" routine than I feel even a "real" diagnosis won't allow me to escape it if my symptoms are too severe from that expected of the disease or if some of my symptoms still remained unexplained. Glad your GI seems like he's going to continue helping you get sorted. I think being cautiously optimistic at this point sounds very sensible; I hope things keep looking up.