Before I begin: support groups work for some. I don’t want to insult anyone that finds them beneficial for their own mental health or dealing with their illness. If something works for you – keep doing it.
One thing in common with IBD patients and people with other chronic illnesses is the need for support; through family, friends, co-workers and medical staff. Support from people who know what you’re going through, others with these diseases, often has the most impact and can be extremely helpful. Some things can’t be explained by someone who hasn’t experienced what you are experiencing which is why I think support groups are so popular. People want to be in a group with others that understand them, to discuss their issues and hopefully get some help and advice on getting back to living life. The problem with these groups? They suck.
Watching my Mum deal with fibromyalgia since I was a kid with the most inspiring attitude really put a dampener on my opinion of support groups. I have to give her the most credit for me not turning into a useless sack of shit when I was diagnosed with colitis. When it would’ve been easy to chuck it in and say this is it for the rest of my life, I thought back on how she would try everything to see if it would give her any relief. I mean everything. Mum had tried to go to support groups back before Facebook and the internet had made things a lot more accessible, and back then she hated it. She had the idea that the support group would be people sharing what had helped them so everyone could get better together – she found out it was the opposite. People who went to these meetings were there for one thing: sympathy. No one was willing to contribute any ideas or positive outlook on the situation, it was a meeting for people to sit around and one-up each other on the “who’s got it worse” sweepstakes.
I understand there’s a need to vent at times and just have someone to listen, it’s very therapeutic. I understand people get overwhelmed by their situation. What I don’t understand is don’t you, at some point, want to do something productive to attempt to change your position? These groups obviously fulfil a purpose otherwise people wouldn’t use them but for someone with a “practical” personality they can be infuriating. I inherited it from my Mum where if you have an issue you do your best to fix it, and you can’t complain until you’ve at least given it a real shot.
I joined a Facebook group for IBD patients in my area a while ago, hoping that they might be a bit more upbeat these days. I was disappointed. I’m happy that people who might not have people to talk to about their situation have a place to vent and be heard but I can’t help but feel a bit cynical about it all. No discussion of alternate medicines no matter how wacky they might be. No discussion of exercise, hobbies, positive outlets to feel better and get healthier. It’s just droves of people who are all complaining. People who, I hate to say it, aren’t doing everything they can to improve their situation. Yes IBD sucks, yes it’s hard and when you are flaring it can be impossible to do anything at all. When I was at my worst I couldn’t even consider doing anything to help myself because I was stuck between the toilet and the bed trying to get in a position that didn’t feel like I was being stabbed through the abdomen. But that was a very brief period of time over the course of me having colitis, and I’ve had a lot of time where I’ve felt good enough to look into different things to help myself.
I hate self help gurus who tell people to “just keep pushing” or you’re a bum if you aren’t running half marathons every week. I also hate people complaining about their situation if they’ve done nothing to make that situation any better. Life’s all about balance and this isn’t any different. Chronic illnesses thrive on people who give up and let the fatigue and pain control them. The less you move the more you hurt. From everything I’ve learned over the last few years having colitis plus 15 odd years of watching my Mum deal with her situation, I think I’ve narrowed down the basics to living a good life with IBD or any other chronic illness:
- Be active. Personally this is my most important one. Fatigue and pain seems to creep in and become worse the less you do. There’s a balance to this like everything in that doing too much can wreck your body but starting to exercise and making it a main part of your life is extremely beneficial.
- Work on your mental health. It can’t be understated that mental health is a huge factor in dealing with a chronic illness. It can be easy to be upset and get stuck in the rut of feeling sorry for yourself but you need to kick that ASAP. Stress and mental fatigue kill you with IBD and will send it spiralling out of control. Practicing mindfulness, meditation and seeking professional help are all great for improving mental health that has the greatest impact on your illness.
- Being a healthy weight. I know from experience that even being 5-10kg over my ideal weight makes me feel like shit. I’m less fit, things hurt more, my mood is out of whack and anything that’s going wrong in my body is compounded. A lot of us with IBD have the opposite problem where we can’t keep weight on, which is also a serious issue. If you can’t keep weight on then you aren’t getting all the vitamins and nutrients you need. This is usually tied to your condition so if you’re struggling to keep weight on then talk to your doctor and try to get your IBD under control.
- PMA and looking to the future. It ties in with mental health but having a positive outlook on your condition and a will to improve is probably the most powerful thing you can do to yourself. We all lost the genetic lottery when we were given chronic illnesses but having that desire to get better and live a normal life is extremely underrated. Planning trips, hobbies, activities and events. Saying to yourself you will be better and you can achieve goals you’ve set helps – a lot.
- Being involved in things outside your disease. I’ve written about how easy it is to fall into having your personality be completely overtaken by your disease. Getting involved in sports, clubs and hobbies that are outside your little world of your illness is extremely beneficial. These things serve as a distraction, you meet people going through other problems and experience more of society and the world as a whole. Having your whole life dictated by an illness is a good way of never getting a break from it. Joining a sporting club gives you things to look forward to, a reason to get out of the house, a way to keep active and a massive social aspect that people often lose.
These are the methods that have helped me the most with colitis. The one thing that I noted people seem to benefit from is the ability to vent and have someone who understands them listen. I’m not naive to the idea that it’s a necessary relief, I do vent on this website after all, I just think that using support groups as a primary way to seek improvement for your illness isn’t a great option. Unfortunately, the support groups I’ve seen haven’t been an environment that fosters discussion on other methods to seek improvement. Everyone with these diseases is different, methods that work for some won’t work for others. Research, research, research. Once you’ve got ideas to try that could possibly help – try them all! Dealing with chronic illnesses is a lot of trial and error to find what helps you. Hopefully my list is a good starting point for options outside of support groups.