In The Beginning.

Recently a dear friend contacted me because their family member had been diagnosed with an Autoimmune disease and they wanted me to help them to understand more.

I felt both saddened to learn that their family member was going to have to deal with these challenging diseases but I also felt so amazed that he had bothered to learn more for the sake of his family.

Despite having so many emotions of my own I did all I could to help and I still am doing so. I have made myself available to assist him if or when he ever needs it. That’s what I believe we can and should do for our autoimmune family out there, without question.

After nearly a decade of writing and advocating about autoimmune illnesses many of the things I have written may have made some people annoyed, uncomfortable, resentful and displeased but if what I do can help just one person with these illnesses than that is all that matters to me. If it helps improve the life for even just one person (and the way they will be supported) it means everything to me.

I told my friend from the beginning that I am not a doctor and I can never give diagnosis or medical instruction, and that each sufferer will differ greatly in their own way regarding their symptoms, their progression, their circumstances and their personality. There is also no single one blue print about how our lives with these illnesses will play out.

He asked me if these illnesses can kill and this has always been the hardest question that I get asked because I never lie about these illnesses and what they can do. I have always answered anyone in the same way “…just because a disease can kill us doesn’t mean it will. We can never know how thing will happen.

It’s as simple and honest as that.

I was taken back to when my own battles started and how things played out in my life. I have never wanted anyone to go through that and I wanted to what I could to spare someone from all that happened to me and my husband. It was enough to drive me to writing these blogs and to fuel my work ever since.

Despite losing many friends and fellow fighters to these diseases there are still so many alive and fighting and that this really is the best way for me to feel that I have done something positive. I never think about whether my own illnesses will worsen or if they will kill me and I don’t focus on this in my daily fight.

During my conversation with my friend I was very focused on assuring him that there really are many people who will happily sign on to help support him (as a relative) and his autoimmune family member, it also became clear that there is still such a lot of misinformation and prejudice out there when it comes to these diseases so I would dearly love to know I have done all I can to set him in the right direction and not let him become influenced by ignorance and lies.

He asked questions like… “what has caused this? Is there a cure? Will just changing diet fix it? Can I catch it? How long will this (flare) last? Will there be operations and medications?…”

It is normal to feel overwhelmed when these things are diagnosed and it seems so amazing that everyone always wants to solve the riddle of autoimmunity. We all think we can and we all spend many years trying to prove we can. We try diets, supplements, exercise, medication, alternative therapies etc all in the belief we will cure ourselves, because at the end of the day the one thing we all want to do, whether we are sufferers or loved ones, is to cure these diseases.

It’s only after many years that we come to the conclusion that we can only learn how to live as well as we can with them until greater minds than ours find the ultimate answers. Believe me, I have spent millions of research hours and have tried every cure being waved around the Internet! But it doesn’t stop us craving a cure and wanting to end to the struggles we face, especially during terrible time of flares or progression.

Is it like cancer? I was asked. “No. It’s not a cancer,” I replied “but there are many ways in which our immune system can misbehave and many ways our blood cells can go awry…” A damaged body is not an easy proposition to face and to cope with. A body that is continually and progressively harming itself can become a full time battle. Often it does.

Will [they] need surgery? Can [they] remove the damaged part of the body? “…Since I am not a doctor and I don’t have a full picture of where and how your beloved family member has suffered there are no cookie cutter answers for all our bodies…” A great many autoimmune sufferers have never had to have surgery to remove areas damaged by our rogue immune systems. We don’t all need wheelchairs. We don’t all have metal joints. We don’t all need donor organs. We don’t all have catheters and aids… But some of us do. Many of us may. And it’s not a competition.

The hardest thing to impress upon a newly diagnosed sufferer or their supportive loved ones is this…

each day will be a moment by moment scenario. You must learn to see it as a never ending processes of mini steps and battles and never as one final push.

I also encourage any caring and supportive members to see their own roles in these situations and to get the help and support they may need too. Family/friends/partners will need to think carefully about the roles they have in the lives of the autoimmune fighter and the sooner they realize that they are not there to dictate the terms of this illnesses or the lives of their loved ones then the better and healthier everyone will be.

Sadly the typical cycle for most sufferers is that initially you may feel a satisfying amount of encouragement and understanding but this can change as the years progress. Once kind and respectful people can become unkind, demanding, doubting and cruel hurdles for the autoimmune fighter. I am not sure why such things happen but I do believe that it is completely unnecessary and should not be laid at the feet of those may be already struggling to have a fulfilling life!

For a moment I wondered what would happen to this newest member of the autoimmune family and what awaits them as they enter such a long and winding road ahead, but I took heart in the hope that this family member cared enough to learn more and perhaps that is all we can ask in the beginning.

To this day I don’t believe these battles can ever be fought in isolation, despite the fact that many of us are pushed into fighting alone and suffering in silence. I do all I can to appeal to the world at large to open their hearts and minds and connect with their loved ones. I keep writing with the hope every day. I am only too aware of the debt I owe those that have stood by me and how I can never repay them for their support and love.

This is the perhaps time he most human of all realizations.

I hope that this family will remember the love and will appreciate each other in the darker times ahead and even when they may feel their most lost and confused may they always appreciate they are not alone. Hundreds of millions of sufferers and their families/friends/partners/loved ones are out there and the more we connect the stronger we can become.

Gentle hugs,

Trish

3 thoughts on “In The Beginning.

  1. I usually start by telling them that the only known cure is the unknown one. I think that it can be such a desperate time that humor (if they are asking me anyway) is a pretty good icebreaker.

    After that I say pretty much what you said. It is true that I often dance humor into the conversation and that works for some folks but not others. Hopefully if they are asking me, they understand I am a little sarcastic. I hope that those who ask me such questions feel good about my responses. I also tell them that when Dx’d Sheryl and I went ot the car and had a very good cry.

    Like

    1. I agree. We all have our unique experiences and personality.
      I think honest and open discussion is the only way to help. I don’t flood with info but I gauge what people would need to know and what would be helpful.

      Everything takes time. Even for the friends and loved ones.

      Like

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