There is no right or wrong way to react to being diagnosed with a disease. Everyone lives differently and everyone grieves differently. When I was diagnosed with a disease I held onto that diagnosis like it was a life vest and I was thrown overboard into an unforgiving ocean because that is honestly what it felt like to get sick. I couldn’t really find any solid ground to stand on, or in my case curl up and sleep on (being sick is so exhausting). So after years of bobbing away in a metaphorical cold ocean with no land in sight, one day I was thrown the life vest. That life vest was named lupus. I took it and I put it on really quickly and it felt comforting and it felt like home. I finally had the answer that made me understand my body and what it was doing to me for years. All of the pain, all of the weird unexplainable symptoms finally had an explanation. Lupus is a very unpredictable disease but to an extent I could predict my future. I knew that if I got a cold I could have a flare up because a cold could be a trigger. I knew that if I did a lot of things one week I could expect to spend the next week in bed because that’s how a body that has lupus usually reacts to physical stress. I knew that if I went out in the sun with my friends in an attempt to have fun my body would be like “NOOO WHAT ARE YOU DOING???” and then I would get a ridiculous rash and want to sleep a lot, because that’s normal with lupus. I found my people online who also had lupus and together we were a team and we were making sense of this life that was given to us. So my reaction to being diagnosed with a disease was to own it almost immediately. My disease became a huge part of my identity because it is a huge part of my life that I cannot separate from even if I tried. It permeates every aspect of my life. Some people try to distance themselves from their disease and say things like “I am more than my disease” which is totally true and a perfectly fine way to live life with a disease, but just not how I decided to cope.
For about eight years my identity was largely built on being someone with an undiagnosed chronic illness. Then for two years my identity was largely built on being someone with lupus. I became a lupus advocate. I raised money for lupus research. It was lupus this, lupus that. And three days ago I found out that my identity might not be linked to lupus after all. So I’m basically in the throes of an identity crisis right meow.
I went to see my lupus specialist on Wednesday because I haven’t seen her in a year as I’ve been a bit preoccupied with a very paralyzed stomach. So I went to see her to find out if I needed some updated blood work and we started talking about all of the health problems I’ve had since we last met. I told her about the gastroparesis and I told her that my GP is pretty confident that I have ehlers-danlos syndrome. She seemed shocked by that because she never ever considered ehlers-danlos syndrome for me. So she had me stand up and show her how bendy my wonky joints can get, and they can get pretttty bendy. She nodded and said yes, it seems to be ehlers-danlos syndrome. And then she looked me up and down and said “I’m not convinced you have lupus now.”
My ANA has been negative for years. It was positive once back in university and that’s it. But my doctors told me that some people have ANA negative lupus and it might not be positive for years. So I was just living under that assumption. But now she thinks it might be ehlers-danlos syndrome and not lupus. Even though EDS doesn’t explain all of my auto-immune symptoms.
So I walked into an appointment expecting to leave with a bloodwork requisition and I ended up leaving with a “probably not lupus” diagnosis. So now I feel like I’m back at the starting line, searching for answers. If not lupus, what? I have so many symptoms of an auto-immune disease that I just can’t wrap my head around it being a genetic, connective tissue disorder and nothing else. And as nice as it would be to not have lupus, I don’t think my specialist is some sort of magical doctor who can write down “not lupus” and then all of my “lupus” symptoms will disappear. I’m still going to have those symptoms. And maybe now I won’t be able to keep them under check the same way as before.
I do feel lucky that at least this time around I won’t be met with lots of “it’s all in your head.” My doctors know that I’m sick, I just might not have the disease I really thought I had. And maybe it is lupus. She didn’t say one way or another. But maybe it’s not. Maybe I have another disease I don’t even know about, on top of the gastroparesis and ehlers-danlos syndrome. She basically said she won’t be making a decision until I see the geneticist. But she also reduced my lupus meds by half. I HAVE SO MANY QUESTIONS! I think my biggest question is: are there other diseases that are LIKE lupus that are more closely linked to ehlers-danlos syndrome? My doctor is looking into this and I’m afraid to google it because I assume the internet will tell me I’m dying because that’s the internet’s favourite thing to do.
Anywhoozles. I don’t know how to react. And because my lupus meds have been reduced now I feel like I’m having a flare up and I can’t really stay awake. I sleep all day and wake up long enough to eat some food. I am basically a baby. At least I have created a cozy little pillow fort for myself to sleep in.
Before I leave I will provide one positive update. My gastroparesis is not getting better with the medication (doesn’t sound positive but wait for it) so my specialist is going to try injecting botox into the bottom of my stomach with an endoscope. I get the procedure on September 11th, five days before my birthday. So all of my fingers are figuratively crossed that it will work for health reasons and also for birthday-cake-eating reasons. I’m cautiously optimistic! I really feel like it would be nice to be able to eat my feelings again.
Okay back to sleep now. Thanks for listening. And for taking this in stride. You’re such a good friend, internet.
DonnaAugust 21, 2017 at 8:16 am (6 years ago)
Gosh, it’s never-ending for you. I can totally understand why you would cling to your lupus diagnosis when you got it, especially after all you went through. And it made so much sense. I’m sorry you are now going through this, it must be so confusing for you. I hope that whatever the outcome is, it leads to some help for you. Can you get a second opinion?
I can appreciate the identity crisis though, finding out I had Lyme disease really threw me. I still don’t really know if I do have fibromyalgia or not… or both… or other things.
I wish our bodies came with some sort of user manual lol!
JayneAugust 21, 2017 at 10:06 am (6 years ago)
Wowee just goes to show how complex it all is. I won’t welcome you to the EDS club just yet but that has heaps of manifestations depending on where it hits you the most and mast cell is sometimes implicated too. Best of luck seeing the geneticist x
JaniceAugust 23, 2017 at 12:17 pm (6 years ago)
How frustrating for you. I hope the Botox injection will help. It seems doctors recommend it for many different things now. However, donuts may still be the only answer.