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10 Steps Towards Accepting Your Chronic Illness
By Kiara Dijkstra @chronically.m.e
Hey everybody! I'm Kiara, my main illnesses are chronic fatigue syndrome and fibromyalgia. I'm so excited to share my thoughts with you all. You can follow me @chronically.m.e
The thing about chronic illnesses is that it always feels like you’re battling against yourself and your body. It feels awful, because your ability doesn’t match your desires. So how do we stop this from happening? We can’t remove ourselves from our illness, as much as we may like to. What we can do however, is accept our situation and show ourselves a bit of self-compassion. Now, a lot of us have heard that a ‘positive attitude changes everything’, by people who are trying to solve all your problems. Which is really demeaning, that’s not what I’m trying to do. This isn’t going to magically make you better, but hopefully it will make it easier. So how do we accept our situation, anyway? I’ve been told to do so a million times, but it’s never had any affect. It seems impossible, I’m not going to ignore the pain of living with a chronic illness. The struggle is real with that one. But here’s a couple of things that have helped me:
1. Ditch the Medical Hunt Now obviously I’m not going to tell you to stop the medical treatment that keeps you alive. Or anything that helps is great. But for me, to stop looking for a cure and trying everything under the sun was the best thing I have ever done. For those of you who don’t know, I have Chronic Fatigue Syndrome and Fibromyalgia, both of which don’t have cures or treatments. So, you can imagine, how emotionally draining it would be to keep holding out hope for something that didn’t exist. Trying one treatment method after another, doctor after doctor, is so exhausting. Both physically and mentally. Even the emotional load of remembering all the things you must do can be overwhelming. So, stepping back, long-term or just for a while, might be a good idea. The main reason it’s so exhausting, I think anyway, is that you’re holding onto this mindset of ‘I am going to fully recover’, ‘I’m not getting better because I’m not trying hard enough’, or ‘I just need to find the right thing’; and that is so damaging with chronic illnesses (your illness isn’t your fault).
2. Change Your Goal Tied to the previous, changing your goal from looking for a cure to looking for management goes a long way to accepting your situation. Not only does this remove the self-blame, it enraptures a more realistic and achievable mindset. Of course, I would love to fully recover and for all of you to, too; and maybe some of you will. However, it’s not realistic. It’s heartbreaking to think about, but if you focus more on what you can do and easing your pain rather than a ‘I hate my situation’ mentality, your load is going to be a lot lighter. It puts importance on the current moment, rather than longing for something in the future that you may never get.
3. Say ‘Screw You’ to Capitalism We don’t often think about it but the thinking pattern of ‘productivity produces self-worth’, ‘I must work or study to be seen as valuable’ and similar ideologies stems from capitalism; a system that only values us in terms of profit we can produce. Unfortunately, this thinking transcends into our mindsets, and those of the people around us. How awkward is it when the one of the first things someone asks you is ‘So what do you do?’ and you have to reply with your limited work or study schedule, or say that you’re not able to at all at the moment. How often do think you did good today because you did x? It’s all capitalism! I’m here to tell you it’s okay to rest! I encourage it. And your worth doesn’t come from your productivity or accomplishments. This also means that if you can’t work or study as much you would like to, it’s okay! You’re not derived of a personality.
4. Join the Spoonie Community Since you’re reading this you might already be introduced. But the chronic illness or spoonie community is amazing and here to support you. Only recently have I started following chronically ill people on social media, joining support groups and sharing my own story but it has been phenomenal. I get to check in on other people and they check in with me, without the pressure of replying immediately or creating a conversation if you don’t want to. You see people going through the exact same thing as you. People show you what helps them. If you want, you get to express what you’re going through to a whole group of people who actually understand it and won’t judge you. Chronic illnesses can be so isolating but joining the community, you never feel alone.
5. Claim your Identity Again linked to my previous point, the chronic illness community has helped me realize that there’s no shame in having a chronic illness. Being realistic about your situation isn’t being negative. Fusing your illness to your identity helps more than you can imagine. I used to always refer to my body as separate to me, because I hated it. I hated it couldn’t do what I wanted. By reclaiming my body as part of me and by extension my illness, you acknowledge that this is something that is happening to you. It affects you, and its allowed to; that doesn’t mean it’s the only thing you are. My personality has changed since becoming ill, but that also includes the personal growth I’ve done since being diagnosed. Also, claiming your illness as part of your identity, makes you feel closer to the community and people who are going through the same thing as you.
Congrats, you’re well on your way to acceptance of yourself and your situation! To give you that extra push here’s five things to help you love and look after yourself:
6. Spring-Clean your Relationships Sounds kinda weird but worth doing. So, what am I talking about? Every relationship you have, platonic or romantic, should be serving a purpose. You help them and they help you. If there’s someone in your life whose only contribution to your headspace is negativity, go ahead and throw that relationship in the bin. You can do that in several ways. First, straight out block them on social media and in real life. Second, limit interactions. Third, don’t value their opinion. For their voice to matter to you, its gotta pay rent. Negativity isn’t paying the bills. Fourth, set boundaries and re-enforce them. People who care about you will respect your needs and want to help you. Having a chronic illness brings a lot of judgement and generally unhelpful opinions or people. That’s not going to be helpful. So why spend your limited energy on people who don’t put the energy in for you?
7. Deal with the Feels Being constantly affected by medical complications is incredibly, well- hard. The pain is immense. And that’s okay, that’s expected. It’s a lot to deal with. However, emotional pain can be as hard to bear as physical pain. The weight is so easily overwhelming. It’s natural to want to ignore and suppress that. But suppression of feelings only helps you in the short term. So, here’s what you do: allow yourself to feel your emotions. Label what you’re feeling, can you notice any negative thoughts? Ask yourself why. Combat negative thoughts by disproving them. Or replace them with positive ones. Next, what you’re going to want to do is either some self-care or distraction. My “go-to’s” for self-care are baths, showers, journaling, calling a friend, meditation or prayer, and beauty regimes. For distraction I absolutely love Netflix or movies, music, hobbies and cuddling pets.
8. Do Half I don’t know about you, but the flares hit hard after over/exerting myself. And it’s so hard to leave the party early because you’re enjoying yourself and having so much fun. But you know the days in bed are coming after. It’s extremely difficult to be accepting of yourself and condition(s) when you’re in a flare. Look after yourself, do half of what you can do. Work with your body, not against it. If we’re using the party example you should leave when you’re still feeling good. Not only does this help limit that iconic ‘Post Exertional Malaise’ but your brain is made happy; and will connect the event with good feelings so you can do it again. Living within your means you’re well on your way to accepting your situation because you’re not denying its existence.
9. Ask for Help Along with number 8 this is easier said than done. It’s a real skill we’ve got to learn. I still want desperately to be independent, however that’s going to do more harm than good. I have limitations, I need help. It’s okay. I can’t expect myself to be the same as able-bodied people. I often feel like a burden, but you need to remember the people around you love and care for you. That means they want to help! They’d much rather you be honest than suffer in silence. Asking for help doesn’t make you weak, it means you’re strong enough to realize how your illness affects you.