The best way to keep informed about my book(s), events, promotions and special deals,
is by subscribing to my mailing list. |
Back to Blog
Lupus.2/6/2024 The launch of my memoir, Recognise ME, took place on the 15th of May. I chose that date for its symbolism in being our son’s 18th birthday, but also as it was the middle of awareness month for both ME/CFS and EDS. These two conditions play a major role in this book about medical gaslighting.
So do a few others. I had questioned myself whether focussing on the above two was the right thing to do. When I saw a post about lupus awareness month, mistakenly thinking it referred to June, I was relieved. This meant I could now reach out to that community and support their efforts too. My knowledge would need to be brushed up to be able to do that, though. It got lost in the chaos of getting adrenal insufficiency stabilised, and dealing with the effects of the late discovery of hEDS. Those caused multiple hospital admissions, often via the emergency department, and various operations. Meanwhile we were trying to raise our boy, who shared some of my health issues, and more. I was diagnosed with lupus shortly after adrenal insufficiency had been discovered. It was used as a generalised term. The ANA levels in my blood were high. The same indicator had previously led to a mention of rheumatism. Both are auto-immune conditions, in which the body’s cells are under attack from its own immune system. It is reasonably obvious this leads to the patient feeling very ill. As I understand it, firm specific diagnosis would need further investigations. The treatment was likely to be similar, involving immuno-suppressants. Given how complex and intense my case already was, I was all too happy for those to be started on the basis of what we knew. Once my health stabilised, I was able to reduce my intake, and eventually I could leave it out altogether. A rheumatologist told me it was possible to have had lupus and healed from it. My theory has always been that I had become so ill that my body would have tried anything to save me. Fighting against itself must have been one such strategy. As my health was managed better, the need for it disappeared, regardless of what terminology was used. So I have felt like a bit of a fraud amongst lupus patients. What I do know, though, is that it is another condition that can cause deep levels of exhaustion, and chronic pain that changes in location and pattern. It is often late to be diagnosed, and many patients have a history of being medically gaslit before, and some still after diagnosis. That is enough for it to deserve some attention. As soon as I looked into it, I discovered May was the time for action for this condition too! I missed a beautiful opportunity. I apologise, and will do my best to put that right. Photo by Ray Hennessy on Unsplash.
2 Comments
Read More
Jill Adams
3/6/2024 13:35:24
Zo herkenbaar, de lupus die de kop opsteekt op het moment dat je lijf helemaal op is. Alsof deze extra er komt om je te dwingen in bed te blijven.
Reply
3/6/2024 15:03:52
Dank je voor de reactie, Jill. Jammer dat jij hier ook door moest.
Reply
Your comment will be posted after it is approved.
Leave a Reply. |