I have the immense pleasure of being a member of two support groups. One for chronic fatigue and the other is run by Endometriosis UK specifically for sufferers, family members and friends of people with endometriosis.
I look forward to my monthly meetings with both groups, as it’s one of the few places where I can drop the pretence about living with illness, pain and side effects, and just relax and be myself.
There is a real pleasure with being in the same room as people who understand you, and the very best support groups settings, don’t just provide you with a place to vent, but they are a source of valuable, personal knowledge that your doctor just won’t be able to cover. Of all the things I have used to help me manage endometriosis, support groups ,pain management, and the Expert Patient Programme have been the most useful tools.
There are a lots of reasons why support groups for your illness are worth finding, but they tend to fall into the following categories:
You can share information about treatments & experiences
Most of the really useful, practical advice I’ve found out about treatments, who to see and which hospitals to avoid have come form my support groups. If you’ve got a question about something, chances are someone in your group has already tried it and can give you some constructive feedback. You can talk to your support group about anything. Information shared there is usually confidential (and crucially) you feel able to talk about the nitty-gritty details of illness that you simply couldn’t stomach to mention to other, healthy people.
We can talk about surgery, bowel movements and even ickier stuff without making anyone feel uncomfortable, or uneasy, it’s a really unique feeling. To talk liberally about your illness, and feel absolutely no shame or judgement about what you want to talk about. Crucially you can talk about the pain you’re experiencing to people who will never tire about hearing it. Sharing your experience of pain and how it’s making you feel is a hugely important part of the support group dynamic. Just knowing you have a place to talk about your illness freely takes a huge weight off of your shoulders.
Gives you vital social contact
A long term illness can be extremely isolating. The burden of living and managing with illness in every waking moment of your day (while simultaneously looking fine) has its own unique toil of each of us. I’ve lost a lot of friends to my illness, and those I haven’t lost I normally see less because exhaustion and pain features so highly in my day. Unfortunately it’s often the things we enjoy doing and people we enjoy seeing the most that are the first to fall by the wayside when we are really struggling with pain. Some days it’s too hard to leave your home, or your bed, and you really have to prioritise your well days so you can do the things you have to do (like work) by giving up time you really crave (like socialising).
The very best friends will understand this, however few can empathise and give you vital emotional support like another person going through the same thing. Even the feeling of being surrounded by a group of people who understand your experience of being in pain day in day out is extremely comforting and cathartic. It’s little overwhelming too, to go from not having many people that understand, to being surrounded by people who could just as easily be describing you as they speak.
A support group may not have all the answers, but learning about each others experiences are just as valuable (if not more so) as time spent with your doctor.
A place for empathy and understanding, not pity
When I inevitably mention that I have a long term illness to others I can practically taste the change in tone of the conversation. The person I’m speaking to stiffens up, putting on on their “pity face” They feel awkward and embarrassed about what to say around someone who is ill or disabled. A normal conversation turns into them retreating into the conversation mainstays of how I don’t look ill, how I am too young to be ill, or my personal favourite, “you poor soul, you’re so brave”. It’s all people know about what to say.
I don’t seek out pity when I disclose my health status, I’m informing someone of a big detail of my life, because if we work together, or see each other regularly my ill health is inevitably going to pop up at some time.
This is the key difference from talking to someone who is healthy and someone else going through a similar situation as you at a support group. They’ll offer you empathy rather than pity, and empathy is much more powerful than pity. Empathy empowers you to keep going using practical experience. Pity is the transference of guilt. This is partly why a room full of people with the same illness is such a strongly willed and motivated group. Someone else with the same illness can give you the motivation to keep going like no one else can. You continue to motivate each other by example, and another ill person is better equipped at realising when someone is struggling before they say that they are.
Finding a support group
Strangely a lot of doctor’s practices don’t seem to advertise support groups as you might think. It’s a bit of speculation on my part, but I think this might be because advice from a support group may not be sanctioned by the NHS, so they have to keep their distance about advocating them too much.
The best way to find a support group is through a charity for your illness. For example Endometriosis UK run a number of support groups up and down the country, and help volunteers set up their own when new ones are needed. I also frequently see posters for support groups where they hold their meetings, in community halls, and in hospitals.
It’s the best way to meet other people who have the same illness as you. You may think that there’s no one around you locally with what you have, but join a support group and be amazed.