Newbie- how to convince people that I'm sick

[Shelleyskis]

Hello All,

I'm totally new to this and having issues just managing what I had as a lifestyle and what I now have as a lifestyle. I am/was a World Cup ski coach and am now stepping down from that responsibility. In part because my diagnosis doesn't allow me to plan properly for the protection and responsibility for my athletes to travel at 130km an hour with the limited resources available to me (we are a small team). Also, I cannot have my athletes in danger because I'm not focused, this disease could be painful for me but it could cost them their life. The prednisone is killer for insomnia, bruising, and sweats (you freeze when you sweat) which doesn't help the situation I'm in. On the side, the high stress, pressure, travel, and high altitude training (14,000ft) has proven to be too demanding while I have this first flare up. I'm in Europe now and my hemoglobin count is still a little low and it's much harder to adapt to the thin air than it should be. But anyway...

So now I have other career choices to make although I'm sure I'll always be involved in skiing. My major issue though is how alienating this disease is. Do people ever really 'get' it? Is there any good way not to shake them in frustration? Some friends get it. Most don't. Oddly, my work colleagues are good with this and understand my decision because they know what my job takes. They wish me well and want to keep me involved on some level. However, does anyone have a good idea how to explain to their family why you've given up a successful career path because they can't SEE that you're really that sick? Jeez.

 

[DJW]

Hi and welcome to the forum. My I ask what you've been diagnosed with? It seems that a lot of people on this forum go through the same issue as yourself; especially in the early stages. IBD isn't well understood by people who don't have it. What makes it harder is the fact that we can be in a flare, feel lousy, but not look like we are on deaths door. Hang in there. Sending you my support and best wishes.

 

[Shelleyskis]

Sorry, for forgetting and thanks for the prompt reply and well wishes.

I was diagnosed with Crohn's Ileocolitis and was hospitalized for 4 days. Low potassium, electrolytes, and hemoglobin are still haunting me. I'm doing as much research as I can. While I finish up my last camp here in Europe it's hard knowing what to do to keep my energy levels and my bowels from suddenly dropping. (try explaining in German to a bunch of guys what your going through when you're the only woman -literally- in the world with your job lol).
Oddly, I'm not despondent about the change in jobs, but I am bit frustrated by my doom and gloom prognosis at the GP's office vs the let's get better at the GI's -I'll take the GI's attitude. The real issue is the family not understanding why I'm quitting a very highly regarded professional position.
Is there any good literature to explain to family what this is? I've tried with pamphlets and such that the GI gave me but they're aimed more at the patient than at those who have to deal with them regularly.

 

[DJW]

I was diagnosed at a young age which made it easier for my family to accept. There are others on this forum who will be better help than me. If it's any consulation the character and drive that got you to the top will get you through this difficult time.

 

[nogutsnoglory]

I like CCFA's resources for explaining to people what IBD is like: http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/ I was searching for a pamphlet specifically geared towards family which I could swear I have seen but was unable to locate unfortunately. All of their resources are helpful though.

I can relate to this being an invisible disease and can't tell you how many times I have had to endure hearing "you look fine" when I felt like I was going to drop dead. All we can do is try to speak our truth but ultimately cannot control what the other person thinks.

 

[plaidknitter]

My favorite explanation for invisible illnesses is the Spoon Theory.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

 

[Shelleyskis]

Thanks! That's an excellent analogy. I'll have to try this out.

Being so new to the whole concept it's like learning to communicate with a different culture of "healthy" people who just look at me like I'm from another planet most of the time.

 

[Axelfl3333]

Shelley how long are in treatment it takes time to settle down I wouldn't,t make any knee jerk reactions with your job you,d be fuming if you jumped the gun and it settles down in the near future,have you tried altering your diet on top of the mads?it does get better

 

[Shelleyskis]

Yeah, I feel that way about my decision as well. I've been definitely adjusting my diet and having SLOW success. Everyday is better but I don't trust myself and that's not good. I'm lucky where I am because this camp we are working with another team that I have good relations with so they're picking up some of my slack. I've thought about this and consulted with my colleagues. It's the lack of predictability while I work out things like my diet and the lack of actually knowing how long I'll be on the steroids for or not. Also being weaker generally and travel also doesn't help. We can really be anywhere and also get stranded for days in places because of snow.

I agree with you about knee jerk reactions but I'm not willing to risk 1% of my athletes safety. What they do in speed is 100% dangerous. Speeds of more than 130km/hr and only a suit less than 1cm thick in most spots to protect them.

It's not something to play around with at this level and I can't in clear conscious continue after this camp. Coaches in the past have killed and been killed when they slip up. Also, we are short staffed for a small team and the federation I work for will not hire anyone else. Days off are pretty much unheard of. Sick days are non-existent. If you are sick...you do your job. It's not an easy industry and I'm already under scrutiny by the federation for having been off. There's a lot of stigma attached to having a 'condition' apparently that I hadn't even thought of before.
If I worked for a major team I would have the structure and support I need to continue but in this environment it's pretty much impossible. This is the right decision for me. Not the best scenario but good leaders have to put the best interests of those they lead first.

Maybe I'll be picked up by another bigger team but that's unlikely given the start of the race season is so close and the fact that I'm a woman. I'm working against a ton on that last front.

Your concern and kindness is duly noted though and greatly appreciated it's nice to know there are people out there!

 

[Dunbar]

As you have already learned from the 'ol boys network' sometimes it takes a long time for the winds of change to come. Patience and a sense of humour go a long way. Do print out the spoon theory-it is a good one. Give out website address'. Find or make yourself a t-shirt (cafepress or the like) or if you want to be professionalish looking wear a purple ribbon. -people are curious, they'll ask about it.

I accept that they don't get it, they will, cause it ain't goin' anywhere, I'll wait them out EASY. Then I go about being involved with a support group, get out the word to whoever makes the mistake of standing still too long hee hee, fundraisers etc.

Concentrate on you, the rest will fall in place. Your responsibilities of course are important but you are more important. Get healthy and be well. Thinking of you and sending best wishes your way.