Mental Health – How do you manage to maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions?
Chronic illness, especially chronic pain, especially chronic severe pain go hand and hand with depression and anxiety. I don’t think anyone could deal with constant knives twisting in all their joints, not to mention fatigue and a seemingly never-ending train of medication side effects and co-morbidities, and not get a little down sometimes. Having said that, I’ve been doing this for well over ten years now, so I have a few strategies I rely on to keep me on top of things.
- Don’t sweat the small stuff. If there’s one thing that having a painful, disabling, progressive illness has taught me, it’s the difference between stuff that matters and stuff that doesn’t. And the vast majority of the stuff that consumes the healthy world DOES NOT MATTER. They worry about manicures and hair cuts while I’m hoping my next set of labs will show my kidney function has returned to stage 3 disease, rather than dropping lower to stage 4 and maybe I’ll be looking at dialysis.
I don’t worry about manicures and haircuts or a bad massage (even if I could afford them). I don’t worry about people who cut me off in traffic (I’m thrilled I’m able to drive at all) and I don’t worry about my steak not being cooked perfectly at that new restaurant in the city (I’d be grateful have takeout from the local Chinese, let along get dressed up and go to a nice restaurant).
- Which leads me onto gratitude. I have a lot to be grateful for, namely, my kids. I spend far more time thinking about what I have, than what I’ve lost. And I’ve lost a lot. My husband, the love of my life, my career, all my friends, my financial future, my travel dreams, all the things I used to enjoy doing (running, playing guitar, singing)…I could go on, but those are the big ones. But what I have is two great kids. And being sick has meant that I have been home with them, and therefore available to them when they needed me. We are a close knit little family of three and my kids talk to me and I know a lot about what’s happening in their lives and what matters to them. There are plenty of people who would love to have had the time to spend with their kids, as I have, but weren’t able.
I’m also grateful for living in a country where I have access to good, mostly affordable healthcare. I have a nice house, we have enough food, we are safe. Paying the bills is a struggle but we have a roof over our head and everything we need.
- Find a psychologist. A good one. One who specialises in chronic pain and the management there of. He or she will teach you techniques to help you cope. He or she will also be a sounding board and a place to vent your anger and your deepest fears. Friends and family are great if you are lucky enough to have them, but most of them will have no idea how to help. Friends and family offer love and hugs, but a psychologist will give you the tools to manage the dark emotions when they come and help you overcome them.
- Don’t isolate yourself. Even when you don’t feel like it, make an effort to keep in touch with people. Even if its only a few text messages or a facebook chat, keep in touch. On a good day, try to get out into the world. Even if you can’t meet a friend, go to a café and have coffee. People watch. Be a part of the world. One of the hardest things about being sick is being stuck at home, unable to get out. People forget you. The isolation can hurt as much as the physical pain. So work hard at keeping involved in other people’s lives, ask them about their problems and listen the answers. While their issues might seem simple and you’d love to have their ‘problems’, remember they are very real to them. To have a friend, you have to be a friend. And we all need friends.
- Don’t let your whole world revolve around your illness. Yes, that’s hard when you average 3 doctors appointments every week, and all of them are essential, but you have to find other things in your life to focus on.
Don’t let all your friendships be with other sick people. People who live their disease and allow it to totally consume their lives are some of the unhappiest people I’ve ever met. Friendships with healthy people keep you attached to the ‘normal’ world.
Ofcourse the more severe your disease, the harder it is to not focus on it 24/7. I know people proudly declare that ‘I have RA, but RA doesn’t’ have me’. Whelp, RA does have me. It controls every aspect of my life, every day. RA decides what I can and can’t do, whether I can walk, or drive…even my most basic choices, such as what I can eat have been taken away from me.
But I don’t spend my life being bitter about it. It is what it is, and I make an active choice not to dwell on it.
- Educate yourself. Understanding the disease in general, and your individual prognosis will help you know what to expect, deal with setbacks when they happen, and most importantly understand when a new symptom or side effect could be something serious, or is nothing to worry about.
Knowledge is power and if you are well informed, you are less likely to worry unnecessarily and wind up depressed and anxious about one possible future that will likely never happen. I see people posting articles about something like the increased cardiovascular risk when you have RA, and then a flood of comments like ‘Oh great, another thing I have to deal with!”. You may never have these complications, and there is a lot you can do to prevent them (diet, exercise). Learn what might happen, but don’t assume it will. Learn so that you can prevent them happening, because many of the complications of RA can be prevented.
Make sure you get your information from reputable websites and preferably your rheumatologist. Don’t believe everything you read on support groups, there is a lot of misinformation online. Blogs of other people’s experiences can be excellent, but remember that just because someone else suffered a complication or co-morbidity does NOT mean you will. Don’t waste time worrying about things that haven’t happened, and may never happen.
- When depression hits, be kind to yourself. Sometimes you need to stay in bed, you need to be cry, you need to be miserable. You want to be alone with your heated throw and your teddy bear. You need to vent, you need to complain you need to scream that it’s NOT fair.
So take that day. But only one day. Do whatever you need to do, or do nothing at all. But the next day, you get up and fight. You get up and you get out and you achieve ONE thing. Just one. You get dressed. You make yourself a healthy meal. Or you do the shopping. Or you do the dishes. You just achieve one thing. And another thing the next day, and the next, and you slowly claw back up and out of the depression pit.
- Give yourself credit. Don’t expect other people to know how hard it was for you to get up, dress up, and show up. Only YOU know, so you be proud of yourself. Don’t wait for praise from other people, they don’t understand. Tell yourself you did well, and believe it!
- Find other passions, ones you can do from the couch or from bed. I used to play guitar, can’t do that anymore, my grip strength and finger dexterity won’t allow it. I used run, clearly I can’t do that. I used to sing, RA has taken my voice. Being unable to do the things you love to do is a huge loss, and you can’t just replace things you love and decide to love doing other things! But if you keep looking, you’ll find something to fill the void.
I took up photography, and while I can’t do the kind of photography I want to do, because it involves getting up high and down low and walking long distances, and moving fast to get that shot, I can still do some forms of photography. Not every day, but some days. Other days the camera is too heavy, and some days even just pressing the shutter isn’t possible (I have a remote shutter to counter that). Some days nothing is possible. But on those days I can read about photography, learn theory. Look at other people’s work and figure out how they created that effect.
Find something to be interested in, keep looking until something sparks a passion in you. Anything, so that you are not consumed by your disease. Back to No.5, don’t live your illness. Make sure there is more to you than a diagnosis (or ten).
- Exercise I don’t care if you hate it, find a form you like. If you can’t find something you like, do it anyway. People take the word ‘exercise’ to mean go run a marathon or do something strenuous, it doesn’t have to be. Exercise can be a short walk, some stretches, holding a few yoga poses. All of those things count and will keep you healthier and stronger and keep depression at bay. Exercise increases endorphins in your brain, the ‘happy’ chemicals, and over time, exercise will strengthen your body, and improve your function, which means you can do more and you miss out on less. It might hurt to begin with, but the benefits will outweigh the initial pain. Gentle range of motion exercises are something everyone with RA should do daily. If you haven’t exercised in a long time, go see a physical therapist and get a program that you can start slow with. Exercising in water is a great way to take the strain off your joints and if you can do some form of group exercise, then you’ll improve your social contacts as well, make new friends and keep yourself connected to the world. And all of this will reduce depression and anxiety.
- Medication. It’s way down here on the list because if you go to a doctor and say you’ve been feeling a little down, they’ll start writing a script for an anti-depressant right away. Medication helps a lot of people, but it doesn’t help everyone. Some people are made worse by medication (me) and it’s not a panacea. Medication alone will not banish depression, it is one more element in your tool box. An anti-depressant might take the edge off to allow you to go speak with a psychologist. Or it might allow you to get out of bed and go for a walk, to start an exercise program, or to have the confidence to call a friend and meet for coffee. Managing your mental health requires a wholistic approach and medication is one part of that.
Remember also that some medications can cause depression and/or anxiety. If you find you’re suddenly feeling depressed, and you recently started a new treatment, consider whether your depression is a side effect. Several dmards have caused me to suffer depression. Stop the medication and the depression goes away. Restart the medication and the depression returns. One medication caused psychosis. Another caused me to be suicidally depressed, to the extent that I actually did attempt suicide. If depression or anxiety are very uncharacteristic for you, consider medication as a trigger as well.
- Be careful of support groups. In the beginning I joined several online support groups, looking for information and help. Some were great and I’m still a part of them. But others were incredibly negative places, full of misinformation, misery and competitions for who’s got it worst.
RA is very different for everyone. Some people are mild, some people are severe. Some are disabled, some do triathlons. Everyone needs support, and everyone deserves it, no matter their situation or if someone else has it worse or better. Everyone will have days when they need help. There are wonderful groups where you’ll meet kind, caring people who’ll help you get through your worst days. And there are other groups where there is nothing but misery and competition and those groups will bring you down. So choose wisely!
And don’t go to support groups for medical information. In the early days I was told that methotrexate was chemotherapy (not in the doses used in RA), that I would absolutely become disabled (much more rare these days, certainly not a given) and that RA was a fatal disease (yes, people die from RA, but that too is very rare. And there is a lot you can do to prevent that happening) not to mention all the ‘cures’ that some people pushed – change your diet, apple cider vinegar, gin soaked raisins, yoga…I was in excruciating pain and unable to get out of bed. Ofcourse I wanted to believe I could just stop eating gluten and everything would be OK. In fact, all those support groups did was scare me off taking methotrexate, and cause me to waste time giving up gluten, dairy, meat whatever the latest fad was, and prevented me seeking the early, aggressive treatment I needed.
These days I don’t often need support from these groups, I try to give it. Especially to newbies. I try to be positive, but realistic, and back the things I say with medical research.
- Learn your triggers. If you know that hanging out with Aunt Bessie always makes you feel miserable, try to avoid her. Some friendships tend to be all about them, ask yourself if you really need those people in your life? When you have limited energy, you need to be careful about where and whom you spend it. If you know that going to that restaurant reminds you of the husband you once had, and the happiness you once shared, don’t go there.
- Live in the present. I don’t worry about the future, because I don’t know what will happen. I also don’t spend much time thinking about the past, because frankly, I was much happier and healthier then. I assess the risks, I manage them, and then I don’t think about them again. g. Recently I came very close to dying. My biggest concern was my kids. I manage my risks by living as healthy a lifestyle as I can, exercising, taking my medications, all of that. I keep in touch with their father and work to maintain the relationship my kids have with him, despite that being very difficult for me. I have my will in order. And that’s all I can do. So I don’t think about it much. There is nothing more I can do, worrying about things I can’t change will only make me miserable in the now. I live my life day to day, not looking too far ahead, and rarely behind.
All of this sounds very matter of fact, I know. And it’s all very simple stuff, but it’s not easy. I don’t hide my emotions, I’m open about my depressive phases. I rant and vent on my blog. Most of all I try to be honest.
Sometimes I fail dismally at all of my strategies, and it takes me a while to get back up again. But I always get back up. I have too much to do, too much to live for, and there is too much good stuff out there to experience. And I want to be happy.