For about…six? years now, I’ve been keeping a really huge secret from the general public. I have mentioned it in filtered posts and to a few people in person, but generally, I’ve tried to keep it from being public information for one specific reason: keeping my mom from finding out. And for better or worse, I did manage to keep it from her and she never knew.
The secret? I have multiple autoimmune diseases including systemic lupus erythematosus (SLE), subacute cutaneous lupus (SCLE), rheumatoid arthritis (RA), Sjogren’s and Raynaud’s.
My mom had battled various autoimmune diseases herself for well over 25 years. Back in the 90s when she started having symptoms and issues, it took years to figure out what was wrong and she got a lot of conflicting information and bad medical advice. This isn’t uncommon even now, though it was worse back then. Awareness of, information about, and understanding of autoimmune diseases still remains woefully lacking even in the medical community. Because autoimmune diseases are when your own immune system attacks healthy cells – including your own organs, tissues, muscles, etc. – it can present as a lot of other problems, and it’s extremely hard to manage since there’s a fine line between stopping your body from attacking itself and not utterly suppressing your natural immune system against viruses, bacteria, and other infection.
For far too long – I want to say more than a decade – doctors just gave my mother very high doses of steroids to “treat” her conditions. Steroids such as prednisone will suppress immune system, but it comes with all kinds of awful side effects and is truly dangerous for long-term use. In fact, all the years of high dose steroids they gave her is what directly led to needing a hip replacement. The prednisone literally ate and killed off the bone in her hip, leaving necrosed (dead) tissue deep in her bone which was extremely painful. Just as bad, is that steroids are highly addictive because the body comes to rely on them and stops producing it’s own hormones, so it’s extremely difficult to come off of it and causes truly awful withdrawal symptoms including pain and fatigue. You have to wean very slowly and all the while, it hurts. If you just take it again, you won’t hurt. So it’s a miserable process and why giving such high doses for so long was inexcusably bad medical advice.
The other thing you need to understand about why I was so adamant about keeping this a secret from my mom is that she carried way too much undeserved guilt. I won’t get into all the specifics in this post – it’s a topic of it’s own – but, briefly, both my biological father and my sister’s were not good men and we lived with abuse and have PTSD from our childhoods. Mom could never let it go that she put us in those situations, no matter how hard we tried to let her know we’re ok now; that the actions of bad men are not her burden, and that she did the best she could for us and MORE than made up for their lack with the love and care she gave to us. But her guilt was a physical thing and weighed her down so much and so constantly. It wasn’t fair to her and we hated to see her carry that guilt so so many years.
So, when I found out I also had autoimmune diseases, I knew there was no way I wanted to tell her. It would shatter her. She would feel personally responsible that she “gave it to me” and it would haunt her. I didn’t want that for her. I never wanted her to feel that way because genetics is outside of anyone’s control and just as I would never “blame” her for having curly hair genetically, I would also never “blame” her for my autoimmune. In 1976, when she got pregnant with me, she would have 0% chance of knowing there was a genetic possibility! She didn’t even know she might have autoimmune issues then, how could she possibly guess 40 years later, her future daughter would? It’s so utterly illogical to think it was done maliciously or on purpose – but she wouldn’t be able to separate the logic from the emotion. And so I knew, I would never let her know.
My sister and I had many conversations over the years about it. She’s been my confidant in all of this journey, and though we both felt bad having to keep it from her, and also recognizing how hard it was for me not to have my mom to support me in this huge, life-changing thing, we knew mom was never healthy enough, or strong enough emotionally to handle this news. It would crush her and neither one of us wanted to add to her massive pile of continuing and ever-worsening health problems.
After her passing, my sister said, “well, you managed to keep it a secret from her” and I realized yeah. It doesn’t have to be a secret anymore. Which is….weird? I mean, I guess it’s liberating a little bit not having to watch what I say or not let something slip, but also deeply sad because I never could share it with her. I never could get support from her about it; a hug, or just a shoulder when it gets to be scary or overwhelming. Yes, my sister has been a wonderful resource for me and is always there to talk, but you know…it’s my mom. And that’s just something unique I had to miss out on to protect her from herself.
In the end, she did so much for me, that even though I wish I had been able to share this huge part of my life with her, I’m glad I was able to keep at least one burden off her shoulders. She didn’t need it; she didn’t deserve that guilt and sorrow, and I try to comfort myself in the secret being a gift I could give her out of love.