After 4 years of struggling not just with living with Autoimmune diseases but also with other peoples reactions to it I thought it best to compile a ‘Top Ten List’ of things to consider if your friend/relative/partner has an autoimmune/chronic illness.
1. Don’t say “You don’t look poorly”
My first thought when I hear this is ‘You don’t look Stupid but there you go….’ No matter what the illness one thing people with autoimmune diseases are very good at is putting on a brave face.
The very nature of auto-immune diseases is that the battle is going on inside our bodies. There are very few external symptoms. You can’t see an aching joint or shooting pains when we move a limb. You can’t see complete and utter exhaustion. In the same way you can’t see the wind yet you know it’s there, we are very aware of the pain and fatigue and we battle daily to keep a mask on both. If we walked round looking miserable all of the time it would make our lives and yours less bearable.
2. Don’t tell us “I read somewhere about a new therapy/treatment/herb”
If we tried every new therapy in the papers two things would be at risk. 1. our health, often these therapies don’t take into consideration the (often vast) drugs we take on a daily basis. Many ‘natural’ therapies would in fact have serious implications if taken alongside some of our medications. 2. Our Finances. These therapies are never cheap. Even ones that are proven are expensive. for example Osteopaths charge around £40-£50 a visit. Herbal medicines and other alternative therapies often have a similar price tag. Many of us are living on a very restricted budget as it is. Much as we’d love to believe the latest big breakthrough we don’t have the money to throw after them.
3. Don’t assume We’re Just Lazy or say “I’d love to sleep that much”
Trust me you wouldn’t! I struggle to make plans too far ahead as I don’t know how I’ll feel at that moment in time. I used to love planning things well in advance and these days I just can’t. I hate not knowing if I’ll have the energy to do simple tasks let alone anything out of the ordinary. I hate having to sleep so much that means I can’t have much of a social life. Fatigue goes way beyond feeling tired. It is complete and utter exhaustion often linked with muscle and joint pain. The closest most people come to that feeling is the flu. Could you get up and carry on with daily life whilst battling the flu? Well we do. Every Day.
4.Don’t tell us “It’s all in your mind”/”You’re just depressed”
These diseases are not in our minds. They are recognised and treated by Drs. We have often gone through at least one if not many years of pain before being diagnosed. These illnesses are rare and often not GP’s first thought. They are identified by blood tests, MRI & CT Scans, and other invasive tests. We may get down at times. We have a chronic illness we are not super human. You would also get down occasionally when faced with pain and tiredness. We also live with the knowledge that our life will be cut short. It could be in the next 6 months or we could live until our 60s but the fact is we don’t know.
5.Don’t Ignore the fact that we are ill
Don’t go on arranging things and assuming we can carry on as normal. Normal for us looks very different these days. Don’t get cross with us when we can’t do the things we used to. Trust me when I say we mourn them more than you do.
6.Remember getting Angry/Cross won’t help
We did nothing to invite this illness in. The medical profession still don’t fully understand what causes our bodies to turn and attack us. It’s not caused by lifestyle choice and there’s nothing we could have done to prevent it. We understand that you may be cross that the person we once were is being taken away and replaced with someone who tires easily but getting cross with us about it make it harder for us to bear.
7.There is NO Excuse for ignorance
Although many autoimmune diseases are recent discoveries there is plenty of information and support groups on the internet. As always ensure that you take what’s said on some of the sites with a pinch of salt. My general rule of thumb with the internet if I find a fact is to try and cross reference and back that up with at least 2 more sites before trusting it.
8. Don’t avoid us
It’s not catching. We are still us underneath. We still need friends to make us laugh and to hold our hands occassionally. We also still need partners to be close with us physically and emotionally. The physical side may be tricky sometimes, it’s difficult to feel attractive if you have a puffy face from steroids and your joints hurt but even a gentle kiss can be more than enough sometimes. Avoiding us just makes the isolation feel worse.
9. Don’t feel rejected if we say no
Autoimmune diseases affect more women than men. Often women struggle with the word no. With an autoimmune disease we’ve had to learn to say no to protect our own health. If we can’t make drinks after work or your fundraiser please don’t take it personally. We have to consider where we will use our energy. If we use all of our energy reserves to attend your event today it may mean we can’t even get out of bed tomorrow. Also don’t feel rejected if we turn down full sexual intercourse. We may feel unattractive due to swollen joints and limbs or puffy faces caused by steroids or just moving our bodies in that way may cause intense pain. Be gentle and understanding if your partner has an autoimmune disease. A passionate kiss can be just as loving. Look at different ways of being intimate together. Have fun working out fun ways. I once read of someone whose husband said he imagined his wife’s crutch/walking stick as pole and saw her as the pole dancer.
10. Don’t stick around through a sense of guilt/duty
We’re still human. We don’t want to feel a burden to anyone. Staying friends/in a relationship with us when you can’t cope with our illness will make things worse. You will end up resenting us and we will end up feeling rejected and let down by you. Get out early and be truthful.
