- Jennifer and Karen McPhail, RN
A Patient Perspective on SLE
Systemic lupus erythematosus (SLE), is the most common type of lupus. SLE is an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs. It can affect the joints, skin, brain, lungs, kidneys, and blood vessels. There is no cure for lupus, but medical interventions and lifestyle changes can help control it (https://www.cdc.gov/lupus/facts/detailed.html#sle).
Below is from my guest blogger who suffers from this disease. It is important for all individuals with chronic illness to have support and guidance along the way. Having some sense of control, an outlet for emotions, and a sense of purpose is vital!
Visit: https://www.lupus.org or https://www.mylupusteam.com for information and supportive resources.
You can also visit the lupus discussion forum and online support group at: https://www.mylupusteam.com
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I have SLE and MThFr. A brutal combination of health challenges. I was urged to post this so I am. Karen McPhail - you’d asked for a commentary or op ed on the subject. I can offer that now.
There are no words that can adequately describe what it feels like to be completely out of control of your body’s power and have to either fight alone to gain an ounce of it back; just so you can move to a safe place, or relent and let it drain you for however long it chooses while your mind sends you thoughts of, what if I don’t survive this? That then of course, leads to all kinds of other mental anguish that does nothing to help you through the flare you are sitting in or those next to come.
People say, “well you just need to rest”. They say, “you do too much”. “Let someone help do it for you”, “trust people to take care of it”. “Try this diet”. “Try this superfood regime”. “Yoga - Mediation”. “Acupuncture does wonders - have you thought of that?”, “Why don’t you try this... that... “
or “my friend had chronic pain and she said...” “I know someone and they had a lot of success with ____.”
And they all mean well and they care. They don’t want to see the anguish you are struggling with. But... here’s the real challenge with SLE. It morphs to whatever body it’s in. It’s a disease that “learns” and “adjusts” to whatever is introduced to its host body and it wages war against the healthy cells and unhealthy cells. It fights healing and Illness with the same vigor. It’s doesn’t differentiate like a normal body does.
So, what “doing so much” does is gives me a reason. It gives me a purpose. It gives me an ounce of dignity that lets me say to MYSELF - not everyone else, “I am not losing this battle, I’m waging this war”. And every time I complete something, every time I fix something or help someone else; I’m winning inside where others can’t see, but I can so I do. Things get hard. Real hard. But hard is relative. I wish sometimes people felt my version of hard. Level that playing field a little bit, but then I realize, that wouldn’t be as fair as it sounds.
The moments of pain and suffering that the outside world sees? Those are the easy ones because they release a cry for help that others witness and hear; causing them to jump in because their sense of humanity gets activated. The hardest ones are the ones that burn your body inside, that tear your muscles from your bones, create sharp pains in the tips of your fingers and force relentless ringing in your ears; stealing any chance of peace in your head. There are days of pure fuzziness, brain fog; where you can’t think straight no matter how much sleep you got or caffeine you consume. Those things, no one but you can see and so... those things are never factored in when someone looks at you on what appears to be a good day and says, “so weird how you can be fine one minute and then so bad another...” And you know what they are doing is questioning, and some are even doubting. Not your illness, but you. They’re validating or questioning what they can with the misunderstanding that if you just didn’t “over do”, those flares they see - wouldn’t happen to you. They secretly blame you a little for your problems because every problem has a solution as they’ve been programmed to believe but that’s not how it works with SLE.
Welcome to my disease and the severity of impact it maintains in its latter stages. The flares don’t actually come and go. They live within me all the time. It’s just that only some of them display as a public show. Try to imagine the story of the titanic if you want to understand SLE and me. This disease is the iceberg that took down the ship you couldn’t sink and I’m the band that just played on.
Jennifer