Crohn's Disease Forum » Support Forum » Partners, Family, Friends & Caregivers » Family member doesnít believe diagnosis?


03-27-2018, 07:15 PM   #1
TexasLiz
 
Join Date: Jan 2016
Family member doesnít believe diagnosis?

Iím not sure how to write this, as Iím so upset I can barely breathe. Was diagnosed with Crohns in 1992, no surgeries, but have been hospitalized 3x. Lucky, right? Just wait.

Just heard sister-in-law openly questioning my diagnosis. In her amazing wisdom, sheís decided that all Crohnies are emaciated. Sadly, years of high-dose steroids took care of that. Probably 70 lbs overweight at this point.

Iíve been fighting this blasted mess for so long, I donít remember what it was like BC. Do I take Biologics for fun?

Could really use a kind word before I have to face her this weekend. Iíd love to call her out, but do I dare? Thank you!!!
03-27-2018, 08:01 PM   #2
ronroush7
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I am sorry that you have Crohn"s disease. I am also sorry your sister in law doesn"t believe you. Has your spouse ever told her what you go through? Sending support.
03-28-2018, 12:56 AM   #3
Lynda Lynda
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Iím not sure how to write this, as Iím so upset I can barely breathe. Was diagnosed with Crohns in 1992, no surgeries, but have been hospitalized 3x. Lucky, right? Just wait.

Just heard sister-in-law openly questioning my diagnosis. In her amazing wisdom, sheís decided that all Crohnies are emaciated. Sadly, years of high-dose steroids took care of that. Probably 70 lbs overweight at this point.

Iíve been fighting this blasted mess for so long, I donít remember what it was like BC. Do I take Biologics for fun?

Could really use a kind word before I have to face her this weekend. Iíd love to call her out, but do I dare? Thank you!!!
I totally understand ! My sister has been questioning my disease recently too. I have had UC for 20 years. Recently my calprotectin levels were high, so a colonoscopy/endoscopy for me next week. My sister acts like I am just going in for a Screening Colonoscopy. I have been trying to explain things to her, but she acts like I am "over-reacting." She actually wanted to talk to my Nurse Practioner on the phone ! My sister wasn't believing me about what my recent appointment was about ! She cannot talk to a doctor about my medical records, my sister is nuts. I am over here worried about getting Crohn's or colon cancer and my sister is thinking I am worrying about nothing. I am trying to educate my sister about my UC, with no luck. Thank God she is just visiting in town the last 4 months and she is leaving to go back to her home on April 1st. The stress from her makes my recent terrible symptoms even worse. I talked too long. Sorry.
03-28-2018, 01:00 AM   #4
Lynda Lynda
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PS : Yeah, call her out ! I had the worst argument ever with my sister yesterday about my UC and although it was emotional, I feel a lot better and all of a sudden "empowered" and was proud I spoke up. ♡
03-28-2018, 06:37 AM   #5
valleysangel92
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Hello, welcome to the forum

I'm so sorry to hear you had to deal with that! One of the most frustrating things about this illness is that its completely invisible to the untrained eye.

How is your sister-in-law related to you? Is she your husbands sister or your brother's wife? If she's your husbands sister, he needs to stick up for you. I know that may be easier said than done, but it's his sister and therefore it's up to him to make sure she understands what you're going through and what her words have done to you.

It doesnt have to be done in an aggressive way, he could try to find a casual way to drop in your treatments or how you're feeling, for example he could mention a specific thing your illness stops you doing or he could say how careful you have to be not to get an infection. If this doesn't work, perhaps he could try getting her to read up more information on steroids in particular. It may not have reached you, but theres a magician called Dynamo in the UK who has Crohns, and he's recently posted a photo with horrible moonface from the steroids. If you googled it I'm sure it would come up, perhaps you or your husband could say something like "did you see the picture of that poor magician, I can really relate to how he feels" and show them the image.

If its your brother's wife, then really the same applies, it's his wife, so its up to him to call her out, but sometimes its harder to call a spouse out than a sibling as you haven't got those family ties.

Do the rest of your family understand? is there someone who you feel you could confide in and get some back up? I know if it was my family my fiance and my mum would really come down hard on them to make them understand.

Again, I'm so sorry you're dealing with this, I understand how horrible it is when people don't believe you, especially if its family. I actually had an ex's mum threaten to put gluten in my food because she didn't believe I had coeliac. That was pretty frightening and made me feel terrible, I was lucky that we were only boyfriend and girlfriend and I could get out of the situation. I'm grateful that my new inlaws are much more supportive and understanding.
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coeliac disease/Osteopenia /Crohns/Arthritis/cluster headaches/
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Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

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03-28-2018, 02:35 PM   #6
Lynda Lynda
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Join Date: Feb 2018
Location: Arizona
Hello, welcome to the forum

I'm so sorry to hear you had to deal with that! One of the most frustrating things about this illness is that its completely invisible to the untrained eye.

How is your sister-in-law related to you? Is she your husbands sister or your brother's wife? If she's your husbands sister, he needs to stick up for you. I know that may be easier said than done, but it's his sister and therefore it's up to him to make sure she understands what you're going through and what her words have done to you.

It doesnt have to be done in an aggressive way, he could try to find a casual way to drop in your treatments or how you're feeling, for example he could mention a specific thing your illness stops you doing or he could say how careful you have to be not to get an infection. If this doesn't work, perhaps he could try getting her to read up more information on steroids in particular. It may not have reached you, but theres a magician called Dynamo in the UK who has Crohns, and he's recently posted a photo with horrible moonface from the steroids. If you googled it I'm sure it would come up, perhaps you or your husband could say something like "did you see the picture of that poor magician, I can really relate to how he feels" and show them the image.

If its your brother's wife, then really the same applies, it's his wife, so its up to him to call her out, but sometimes its harder to call a spouse out than a sibling as you haven't got those family ties.

Do the rest of your family understand? is there someone who you feel you could confide in and get some back up? I know if it was my family my fiance and my mum would really come down hard on them to make them understand.

Again, I'm so sorry you're dealing with this, I understand how horrible it is when people don't believe you, especially if its family. I actually had an ex's mum threaten to put gluten in my food because she didn't believe I had coeliac. That was pretty frightening and made me feel terrible, I was lucky that we were only boyfriend and girlfriend and I could get out of the situation. I'm grateful that my new inlaws are much more supportive and understanding.
What a lovely post, thank you for your support. ♡
03-29-2018, 10:30 PM   #7
Lynda Lynda
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T.G.I.F. ( almost )
04-01-2018, 12:46 AM   #8
Lynda Lynda
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Saturday night and still dancing ! Ha Ha.
04-08-2018, 11:41 AM   #9
bobbet
 
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Sorry to hear of your dealing with this insensitive human being!! How insulting to deny your illness when you are suffering. I have personally had this in the past and it does hurts, especially from those closest to you. I think it has taken me rolling around screaming in agony on diamorphine in the hospital for some to realise how bad this condition actually is. I personally say to someone now questioning me "Do you realise how insulting you are to my suffering?..if you don't know anything about my condition please don't speak to me about it" this usually does the trick and they don't dare mention it again. I also just blank ignorant people.
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