21,125 members16,745 posts


Hello all, I'm still relatively new to the group. I have my first rheum appt on Friday and am so so nervous. I am desperate for real answers and a diagnosis that is real and I can justify why I feel thirty years older than I am. 8 have six:eleven criteria but negative bloods (which were done on steroids) and even had surgery for tendon damage. I'm just terrified they'll say no it's all in your head or something to that affect!

Meanwhile I'm really struggling with people's reactions to the suspected lupus diagnosis. People don't know what to say!! It's so surprising! Family and friends just don't want to ask further. At one point I was in a wheelchair and need hip surgery on both hips. When I bring that up people just change the subject. This is so life changing for me yet people don't want to know and I am finding that hard. I don't want to ruminate on my health but when every day you are struggling it's hard not to. Just looking for an understanding ear I guess!!

6 Replies

Hello so glad you're here & have posted. Dare I say that pretty much everyone here will identify with these feelings you're experiencing in anticipation of this consultation. And also with the reactions you're getting from those around you. Courage, dear: no genuine immune dysfunction & connective tissue disorder expert medic could react to your symptomatology in the way you've described...and any medic who dares react that way deserves to be ignored.

Also, when those around you are standoff-ish etc about your health, remember you have all of us right by your side really, truly, madly, deeply understanding what this is like for you physically & emotionally: we're here for you 24/7...which can take the heat off those who are fond of you, or even just meeting you but don't know how to understand & relate to the enormity of the health issues you're living with

You are THE great expert on your own body...I'm sure you've reviewed your multisystem history, signs & symptoms. Now, try to have as quiet and peaceful a time as poss over the next few days. Get plenty of rest. You're going to ACE this consultation.

Remember: if the consultant lets his/her end down: no worries! There is the right True Detective medic out there ready & waiting for you. My first rheumatology consultation was a good beginning and gave me valuable experience presenting, but my second a few months later was FANTASTIC 💡💡💡💡and began the wonderfully fruitful diagnostic & treatment process that has gradually helped me to MUCH less pain & more mobility + back to levels of resilience & stamina I lost in my I am at 63 feeling reborn 🤗

Can't wait to hear how this appt goes...please let us know

🍀😘🍀😘 coco


I totally relate to how you're feeling! I'm very new to this whole autoimmune illness world and so far I've learned that people generally don't know what to do or say. For me even family members will change the subject or seem not to care of believe me when I talk about my symptoms. I have realised though that's it's not because they don't care but it's just a very hard thing for them to understand because it's not an illness you can see.

It's tragic that it's like this but I think it's just human nature that if you can't see an injury or illness you think it's not there. Unfortunately that's not the case as we all know!

I haven't let it stop me talking about how I feel though and remember that since people can't see that you are unwell they won't know how you're feeling unless you tell them. It's going to take time for people to realise that this is real and that is not going away.

I had my first Rhuemy app a couple of weeks ago and I was nervous just like you but I promise you it's going to be fine, every Dr I had seen prior to the Rhuemy made me feel like I was making everything up and like it was all in my head but after having abnormal bloods and being referred it made me feel so relieved that I was being taken seriously finally! Remember that you wouldn't be referred unless they saw good reason for it.

Best of luck with your appointment, take somebody with you if possible as it's so much info to take in with just one set of ears! Let us know how it goes.

Take care x


Speaking as someone who has had a crash course in this whole business (from zero to housebound in a year!), I completely sympathise with your feelings of nervousness and isolation. It is a really difficult diagnosis to understand and to manage.

I'm not sure what that I have any brilliant advice, but for the rheumy appointment, the most helpful things may be 1) to prepare by making a list of specific and quantifiable changes to your everyday life that you have noticed (such as any decline in how far you can walk, or pain levels) 2) if your medic is reluctant to give you a diagnosis, try to pin them down to some practical suggestions. By that I mean, ask them if they don't think the problem is due to (say) an auto-immune condition, what is their explanation for the symptoms and what do they propose as a way of managing them?

Otherwise, do keep in touch with this group - I have found it massively helpful. Good luck! Mx


Hi lilibetlizi The Charity Lupus UK have some really good info that may help In particular this about visiting Drs ... .... This about family and friends ... and they do a DVD for newly diagnosed that you and close family and friends may all find useful .... There may even be a local Lupus group that meet up and welcome both those with lupus and the family

Re other people I think it's important to talk about how it all affects you to close family and friends, as it can be hard dealing with things on your own. The "spoon theory" works well as a way to explain limited energy, fatigue, and how you need to pace everything you do (even on days that are "good days" and even when you look quite well ) ..

With people who are not as close I tend to either chat a little about Lupus and my health if someone asks, or "brush it off a bit" if I get the impression that people are not interested. In my experience many people are interested enough to ask basic questions (particularly friends and acquaitanances) and I've even had complete strangers spot my lupus UK sticker on my walking stick or comment in the summer that I look "summery" ( as I'm wearing a sun hat) ... If I get the impression these people are interested I hand out Lupus UK bookmarks ... it all helps raise awareness. It amazing how many people really are interested or know of someone else who has Lupus too

1 like

I know exactly how you feel , when you are consumed with pain , not sleeping well, and constantly exhausted its hard not to worry about your health! All you want is an answer that validates how you are feeling! I guess no one understands this unless they have experienced it! Its hard, as I too often feel people and family even look at you and outwardly you look fine , even though every day its a hard struggle that they can't appreciate. That is why I find this site so helpful!


I know exactly how you feel. I finally got a referral to a rheumatologist from my GP just yesterday. I was so relieved but now I'm extremely anxious that I'm going to get there and there be no definitive answers...just like the last 10+ years of frustration! My partner doesnt know what to say to me because he can't understand why I'm always arguing with doctors. My mother said I wasn't to mention it to her again until I had a diagnosis because she couldn't take the stress and the only thing that was wrong with me was having the ability to look up all my symptoms on the Internet (thank goodness I do because asking the GP wasn't getting me anywhere!). I'm not desperate to have something wrong with me, just to have a reason for life being so difficult and to be able to tell people there's a valid reason for the way I am! Good luck xx


You may also like...