Guest Blog: The Mental Journey of Accepting Chronic Illness
Written by Jackie
So finally. The word is out. I have fibromyalgia; a chronic illness. In other words: you’ll be kinda sick forever but can still kinda function too. Now what?
I found out pretty quickly that I had to make mental adjustments in order to accept the physical pain and future vision of fibromyalgia. I feel like I can handle the physical part (on most days), as long as my mind is calm.
The main part of the mental challenges is THE AMOUNT OF QUESTIONS!
Who tf am I without pain? Am I acting from a place of fear and pain? Or is this fine? Am I avoiding pain and therefore staying in bed? Did I take my meds? Should I even be taking them? What the hell did I just feel on my chest? With what pain levels will I wake up tomorrow? Will I keep feeling my legs within the next hour? Do I stand up for a 70 year old woman on the metro? Do I call in sick or is my ‘normal’ not sick because it’s always like this? Will my pain get worse?
And most importantly: how on earth am I going to make it through life feeling like this?
I can get very much stuck in this pattern. Literally every day. That might also have to do with the fact that I’m a Libra and I’m 24 but let’s write another blog about that. It makes sense that this happens, ‘cause now that this diagnosis is here, I have to teach myself to trust myself all over again.
What helps me?
1. The biggest helper for me is to stay in the ‘now’. For now, I’m doing what I can (chill/enjoy/medicate/talk/breathe) and that’s okay. It helps me lots and lots but it’s definitely not easy.
2. Feel what you feel. Resisting your own feelings only waters those feelings, and it adds extra stress to it. What you focus on will grow. I tell myself: alright, I feel like shit and that’s fine for now. Stressing about stress won’t help.
3. Every Sunday night, I call my sister (love you!) to discuss my planning of the upcoming week. What am I feeling anxious about? How can I break that task into smaller tasks until the anxiety disappears? When am I planning to rest? Am I sure I can fulfill these plans on a good AND bad day? It calms my mind sooo much knowing what will happen and that I can do it, no matter how I feel that day. It gives me the opportunity to live my life fibromyalgia guiding it. That way I ease my mind and less questions pop up. Of course life still happens but I can’t control that anyways. (You guys see me letting go?! #proud)
I don’t want it to but sometimes anxiety overrules my character. It pops up whenever it wants. Someone near me sneezes and I’m scared to get sick too, I’m out of food so I’ll know my body will hurt soon, a person’s bad energy, driving too fast, driving too slow, whatever. Not being able to trust your body can really shake things up and make you generally feel super anxious.
Anxiety is beyond being ‘scared’ or ‘nervous’. It’s feeling rushed, chased, unsure, contemplating the worst case scenarios and lowkey counting on them to happen, you can physically feel it on your chest, skin or wherever really.
What helps me:
1. My biggest win: I learned to note my thoughts. Instead of: ‘I can’t do this’ I notice ‘I am having the thought that I can’t do this’. See how different that feels? Your thoughts don’t always have to be facts. It creates a little welcome distance to your full mind. I’m training myself to do this 3 times a day. I take five minutes, sit down and just note and note and note what I’m thinking. I connect with myself, what’s going on, what I’m worried about and most often I notice that my thoughts aren’t always true and that I’m okay. It’s reassuring!
2. Meditation. Take time to find out whatever works for you. It can cause a serious physical shift in your nervous system, shifting you into the state where your body recovers and rests. I recommend everyone to research the effects of meditation on the parasympathetic nervous system (the recovery-state I just mentioned). You’ll really understand why meditation is worth investing your time in. Also, it simply feels really good and calming.
3. I journal in the evening about how my day was, what went well, what obstacles I had, how I handled them and how I well I guarded my boundaries that day. No judgement, just analyze what happened and what didn’t happen. Whenever you reflect on your own behavior; talk to and about yourself like you would talk to the person you love the most. Be kind, gentle, forgiving! Again: whatever you feel is okay, acknowledge it and breathe.
THE BIG D (bahaha sorry I had to):
I mean depression though. Having as much pain as we do is tough. We look happy and healthy. But the physical pain and deep fatigue is always there. Also when I smile, also when I dance or laugh. My basic health level is feeling like I have a flue and and finished the craziest workout ever. At the same time. Setting alarms because of the bad memory, but forgetting what the alarm was for. On a good day that is. Knowing researchers probably won’t find a cure within the next 10 years and most of my friends can’t remember the name of my diagnosis. Besides our hormonal imbalances that can cause depression, this situation alone can easily get you there too.
What I do:
I’m definitely not going pretend I know the solutions for this. I have no clue. But:
1. Talk about it. Open up to someone. Online, in the real world, a friend or a professional. Give your mental health the same attention as your physical
health. You deserve it and it’s totally normal.
2. I try to look at it as something that’s not functioning properly in my brain. Just
like a leg doesn’t when it’s broken. I once read depression refers to needing ‘deep rest’. We are tired of playing the role of being fine, and we know it, we feel it but we look fine and years of pushing through made us forget how to actually act on our feelings. I believe undigested emotions and traumas are the things we should really look at. I hope to learn how to properly feel again, so normal events don’t have to result in panic attacks and this kind of big D.
3. Also, and this is tough, I believe I have to do a lot of self reflection and research. What are my patterns, how do my own actions influence my (mental) health, how do I cope with emotions and are there more beneficial ways to process them, do I have the right people around me, do I take care of myself properly? Take that deep rest. Reflect within until you reflect light again. Mind you: definitely not trying to say it’s your own fault: it’s not.
I guess going through depression is not a linear process. Some days I can feel myself radiate love, while I legit don’t want to breathe an hour later. You know the size of the steps a baby takes? I’m trying to take 10% of those at a time. Otherwise I won’t stick to them anyways and feel bad about that again. I sincerely wouldn’t want my worst enemy to ever get depressed. It’s a fight against your own thoughts and reality. You’ve heard life is supposed to be more fun but it just really isn’t. It’s confusing and the good news/bad news-ratio just feels totally out of balance. It’s like a dark heavy blanket that’s always draped over your entire body, but I’m starting to pick some holes in that blanket and let some air in.
Chronically amazing though Chronic. Enough said. Accepting that takes a lot of time. I have no idea how much. I’m still wondering what acceptance even really means. I don’t want to just surrender and give up, but I could definitely use some calmness by stopping to fight the fact that this illness is in my body (and mind). I try to apply all of the above.
I think mourning your old self also is part of all of this. You go through all kinds of emotions, thinking about who you used to be when you were healthy. I’ve learned that I really need to view it as the loss of a loved one, and again, take my time. Like said before, I think about today and for now I’m doing all I can. If anyone has more tips to better my patience, please let me know.
My biggest suggestions:
Hug every dog you see, don’t forget you’re allowed to have fun too, and love yoself!
I'm Jackie. I sing, work as a writer and have a profound love for dogs and fries. I'm 24 years old, living in The Netherlands. If you want to ask me anything, you can find me on Instagram at @jackwaleen.