What does it mean when the Lupus starter pack information says “Lupus has no cure“?
I’m asking this question from the personal point of view. I’m asking from the ‘this person who has a full and complex personality, a wide range of opinions, hopes, dreams, faith – but has now been told that they have to live with a condition that originates from scrambled, disconnected, misdirected directives on the cellular level that results in a confusing array of symptoms for the rest of their lives’ point of view.
I’ve just had a snapshot of an ongoing conversation with a friend who is living with another chronic illness that ‘has no cure’. People, wonderful, kind, at a loss but well-meaning folks often come up to people who are ill and tell them something along the lines of ‘I have been praying for you. You have been healed. If you believe it, in Jesus name you are healed.’
So, what happens the next day, or the day after that, if I wake up and I still have Lupus, or Cancer, or Bipolar Disorder?
There are several things that bother me about these wonderful, inspired blurts of healing.
So, let’s say your person who has just been diagnosed with Lupus is in fact a fellow believer. The bottom line fact is, in this life, in this world, in this set of realities, they will have to live with Lupus or whatever and the challenges that condition brings. Faith in God, belief in his power, hope in his promise of wonderful realities to come does not negate that in this moment, day to day, we are living in a reality that has violence, corruption, inequities, HIV/AIDS, Malaria, Cancer, Lupus and all those other nasty things we have to live with.
Faith in God and hope in his promises can provide a positive outlook, give you strength and keep you warm if that’s what you choose. And accepting the reality of Lupus or any other chronic or even terminal illness does not have to take away from that. It should not.
What that wonderful well-meaning prayer does to the person who has to accept Lupus, take care of themselves, take their meds faithfully, protect themselves from sun exposure and infection risks, eat properly, rest when necessary, exercise appropriately, all those things a person living with a chronic illness has to be aware of and take extra care of – what that prayer does to him or her is say, ‘You don’t have faith. You don’t believe. You don’t have what it takes to get well and stay healed forever.’
It is not kind. It is not understanding. It is not supportive. And it is even not biblical, if we have to go there. If we follow the scriptural thread, we get sick, get old, and die because we are imperfect. We are imperfect from the Adamic sin. Jesus’ death paid a ransom which guarantees life without illness and without death for everyone who exercises faith in Jesus and that ransom sacrifice. But perfection doesn’t miraculously appear in this system of things, not in this set of realities. Everything has to be made new first. Then death, sorrow and mourning will be no more. (Romans 5. I Peter 3. Revelations 21. Isaiah 33:24)
But let’s put the bible down for a second, and think with both logic and empathy. I have Lupus. Yes, it sometime makes me very sick. And I am paranoid about being around people with the flu or being exposed to too much sun because I know the kind of pain and discomfort that brings later. I take my meds faithfully. I self inject my weekly dose of chemo. I take my vitamins and supplements. I still feel sick most of the time but the precautions I take stop my body from going into autoimmune overdrive and literally destroying my organs and tissue from the inside out.
I have to live like this for the rest of my life and I have accepted it. I am in pain a lot of the times but I am happy. I try to be productive, I love and care for my people as much as I can. I take good care of my pets. I love books. And though I can’t do much in them, I adore boots. I love mystery and police procedurals. I have watched all of them. I read voraciously, indiscriminately about autoimmune disease, about new frontiers in space exploration, about obscure cultures, and music from different corners of the earth. I love kids but recently have had to stay away from them until my new antibody therapy can kick in and some of my neutrophils can grow. I run an informal library lending service for kids from house so I really need to send someone to ferret out used children’s books from somewhere.
I have Lupus, but I am me and I am ok.
What does your wonderful, mysterious blurt of healing do to me? I know it makes you feel better. But for me, it means that you do not see me as a complete human being because I have Lupus. It means that if I don’t get better I have somehow let you down. It means quite simply that you have not understood or taken the time to understand what Lupus is, and so basically this entire post is moot. We are not friends. So I really shouldn’t care what you think.
Anyone who cares about someone living with a chronic illness will want to understand what is going on. I love that my mother is a woman of faith and prayer. Every day she prays for me to have strength to endure whatever storms Lupus will bring. She prays for me to come out of it a better and stronger person. She prays for me to not give up on my true friends and on love. She prays for me to find answers even when it is dark. And I pray for her to find comfort, and courage, and joy beyond all measure.
P.S. The visualisation below was made by artist Sylvenus Kym Kym at a time when I was at an ultimate low. It is a reminder that though Lupus hurts, cripples and changes my outward appearance on the inside I am still me.