NRAS

Insensitive and ignorant people

Hi there, I just need to vent to people I know will understand. Background: I have been in pain for the last 11 months. It started back in April 2017 in my lower back and hips. Then in February I began running a low grade fever every day and I began to have pain in my upper back, shoulders, neck, elbows, wrists, fingers, knees, ankles/back of heels, and toes. I'm extremely tired all the time and overall feel unwell.

My first appointment with a rheumatologist was yesterday, and he thought it might be ankylosing spondylitis, but he is also testing me for RA and Lupus because of my family history. I got lots of bloodwork and x-rays of my hands, feet, and pelvis/SI joints. When I got back to work today, one of my co-workers asked how my appointment went. I told her his thoughts about the AS, RA or Lupus and the tests he's doing. She said, "so he really thinks it could be autoimmune", to which I replied "yes, that's why he's testing me for several autoimmune diseases". Then she said, "So he doesn't think it's from all your exercise this past year?'. Are you kidding me right now? Exercise does NOT cause a constant fever every day. Exercise does NOT cause widespread joint and bone pain. But just wait, it gets better....

She then said "Well for your sake, I really hope all the tests are negative". I finally stood up for myself and said "Actually, I hope they are NOT all negative because that means I would be back to square one with no answers, no treatment, and would continue to be in pain all day every day." She said that her aunt had rheumatoid arthritis and she saw what she had to go through. She kept saying it's an "awful, awful disease" and that she just really hoped I didn't have that. I told her it's not like I want to have RA or some other autoimmune disease, but I don't want to feel like this anymore either. I need answers so I can start meds and hopefully start feeling better. She said "Well I'm sorry, but I still really hope all the tests are negative". I know that she's probably just trying to be nice in her own way, but why couldn't she just say "I hope you find the answers and relief you need". Or how about "I'm sorry you're going through this and I hope they figure out what's wrong so you can start feeling better". I just don't understand how people can be so insensitive and ignorant.

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Some people are thick at times and don't see the bigger picture. At least she is well meaning and she did ask how you got on even if she didn't get that you need answers. xxxxx

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Hmfeindel, I'm really sorry you're in so much pain. I totally understand you; I've been in constant pain since September, I was lucky because my physiotherapist sent me to the rheumy "just to discard RA, I don't think you have it" ... well, I did have it. Bottom line is when I got the diagnose I was happy actually because finally, I could put a name to all that abnormal suffering ... As for people... they are mostly insensitive but there are a lot that mean well even though they do not know how to cheer us up, is not really there fault, it's just they can't behave otherwise.

I'm new here; I found a safe place in which I can interact without being judged, I hope it helps you too. In the meantime, let's hope your lab results are the first step to getting better. Cheers!

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Hello Hmfeindel, I totally understand what you mean- of course we don't want there to be something wrong but now after all the pain and waiting I want an answer and treatment and help! Negative test results just make everything harder. My clear bloods have slowed the process down.

When I am already feeling strained due to the pain and tiredness, I find I just don' have the energy to deal with people! I haven't even told the people at work because I just don't know how to start the conversation and deal with the questions.

I hope you get answers and tailored treatment soon. I am delighted because after GP referring me in Januay I just received a letter saying my app with Rheumatologist will be 27 April.

Good luck Hmfeindel!

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Commiserations. It's the remark about exercise that's really wound you up i think, unqualified people making crass remarks without knowing anything about this disease. I have family member obsessed with turmeric as cure for me: doesnot seem to get that immune system is culprit and blood not joints transmit around body, nor that it's therefore systemic and causes chronic fatigue.

Still thinks it is a form of osteo arthritis as do most of the media, rather than joint pain being just one symptom. RD needs some seriouslyinformed publicity and exposure in the media in general. I do sometimes think if i had another auto immune disease like type 1 diabetes or MS would anyone suggest turmeric. I get fed up with reading articles under the general heading 'arthritis' which link RD and osteo when they re 2 different things. There is no distinction in the press and That's the real problem.

Tbh i think she probably was trying to be nice; she clearly has knowledge of the disease and seen results in her own family but it's often just one silly remark that sets us off isn't it? Obviously sports/exercise injuries can cause osteo wear and tear but have stuff all to do with RD. Don't know what you do about it tho, so many posts on here about this kind of thing 😁

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"So he doesn't think it's from all your exercise this past year?"

A controversial opinion maybe but I'm willing to bet your colleague is a stranger to exercise. I bet she doesn't exercise and the fact that you do makes her feel inadequate. She's trying to validate the idea that exercise is harmful in order to feel better about herself.

I know what you mean about the tests etc. too - when I was diagnosed, it was a blessed relief that someone was finally taking my pain seriously. The sooner you know what's up, the sooner you can deal with it.

So don't dwell too much on your colleague, will you. At every workplace, all across the world, there is that one person who, whilst they mean well, always manages to say the wrong thing. At least we have other people who understand and they are right here xx

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Yes, "they live amongst us!" 😤

Only when we look in the mirror 🖱 & see the reflection back — ’we’ 👥 are ‘them’ ‘👥 — can we move forward. 😳 🤯 🙃

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Off topic (Zen Koan) aside — apropos of nothing — merely in memory of Dr. Stephen Hawking (1942 — 2018) 👼 ( bbc.com/news/uk-43396008 , nytimes.com/2018/03/14/obit... )

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"When is a black hole not black? When it explodes."

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😌 🙏 🍀 🌺 🌞

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Oh dear, we hear it time & again, I'm sorry you've had to experience it even before being officially diagnosed. I also hope you don't receive a diagnosis, I've said this many times but never considered it from your angle, that you need a diagnosis to put a name to the awful pre-diagnosis & very real symptoms & be able to start treatment to alleviate them.

It's only by us having been where you are we get what it's like, your friend can't & was sort of saying the right words but not the ones you needed at the time. I knew nothing about RD before my GP strongly suspected it at first examination even though my Nan had it. I couldn't appreciate how much those damaged hands hurt yet she'd hold mine when crossing the road. Your friend can't feel your pain but maybe it was her way of wishing it & a diagnosis away.

We think & react differently when pain is gnawing away at us, we're not as patient, things get blown out of proportion & we misread good intentions. I know I've been a grump many times when in pain, most recently with a lung infection. I had a lot of sorrys to say once the pain was under control & I thought back on how I was for the 11 hours at A&E, my h didn't once snap back at me, he was nothing but kind & supportive, I realise that now. Anyway... maybe your friend was hoping it was just exercise that had caused your symptoms because she understood through her aunt how your life changes with a diagnosis. I don't know, neither do I know your friend but I do know that I, we, understand. It helps to get frustrations, rants, anger down somewhere you won't be rebuffed.

Do keep us updated on how things are. I hope the results are conclusive then a treatment protocol can be sorted. Meantime we'll help wherever we can, just ask & we'll happily give our experiences.

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