If you happen to have an Autoimmune Disease you will instantly and deeply recognise the term flare or relapse.
They are words that strike fear into the hearts of even the most stoic of fighters.
But if you are not an Autoimmune you will understandably not have a clue what these terms really mean. Please consider yourself extremely lucky that you don’t know. This piece is my attempt to bridge that gap in understanding. Or at least to try.
Flares and relapses are painful enigmas to sufferers and doctors alike because there is no way to control them, predict them or cure them. You simply have to hold on and hope. Some medications can help ease them but it really is mostly unknown.
Everyone experiences flares in their own way, although there are some common themes.
1. We never know how long they will last.
Sadly this can be the most painful part because it can wear you down emotionally while you are waiting until you finally feel some relief. This may be a day, a week, a month or many months. Sometimes even years!
2. We don’t always know how they will affect us.
For example MS flare or relapse can cause a variety of different symptoms from vision issues, migraine, tremor, incontinence, fatigue etc and RA flares can cause joint pain, fatigue, heart problems and chest/lung issues. It really can be most unpredictable.
3. Sometimes the medications don’t always work.
The traditional medications like IV steroids and anti inflammatory medications may not always ease the pain of a flare or make it more manageable and can even causer other issues to arise. For example I am no longer able to use IV steroids as they cause some very frightening reactions. Many others experience these too. High doses of anti inflammatory meds and antibiotics can impact on our stomachs and those with IBD issues.
4. The emotional impact can be hard.
Not knowing when you will return to a better state of being and enduring harder pain and suffering can be torture. It wears you down emotionally. Many of us suffer with the extra burdens of depression and isolation during these times. Understandably.
5. No one knows exactly why they happen.
It could be anything from over exertion, a stressful or sad event, a flu, weather changes, or it could be your body simply misbehaving like a petulant child. No one will ever really know but we try to find some triggers and avoid them at all costs.
Hence we may stay away from crowded places, stressful people, taxing events and demanding situations.
A flare can be understood as a worsening of a current symptom. Ie. Swelling, pain, tremor, fatigue etc or a new symptom that may arise suddenly. Ie. Kidney pain, uti, incontenance, fever, swallowing problems, balance issues etc. the list is endless.
Unlike many other diseases, Autoimmune diseases are rarely a stagnant thing. Over time they will generally progress and the progression is also extremely unpredictable.
We all hope for remission and achieving a state where we have some control over our disease activity. But this is rare and for those who have achieved remission or remain high functioning we genuinely hope that this will remain for as long as possible.
My own history is one of relapses, and slow but steady progression over many years (specialists predict that it is more like twenty years) until one day it decided to speed up very quickly. I know many people with the same history. However I did not know how many until finally being diagnosed and connecting with many millions of people around the world. All fighting in their own way.
My current flare is one of joint pain, extreme fatigue and nervous system malfunctions. How long will it last? I don’t know. I truly wish I did. How long has it lasted so far? Five months and counting…
Because we never know we have to try so hard to train our minds to live for now and focus on each moment. Constantly hoping and believing. Finding comfort and strength in the little things in life.
And we do try to everyday.
I hope that this has helped to bridge the gaps in understanding for those of you who don’t have an Autoimmune disease but know or love someone who does.
You are more precious to us then you will ever know and we hope that one day you will understand a little more what it is like to be in our shoes.