Living with chronic illness suck butts. There I said it. It’s hard, hurts, and is generally hell.
In this post I will describe some losses and thing spoonies will tend to grieve as a way for friends and family to get some insight into what we have to experience in our journey. And for us spoonies, how to help those grieving processes and how to manage feeling like life just took a big dump on you. So here goes.
The 4 Major Losses of Living with Chronic Illness:
- Loss of the Life Before
- Loss of Friends/Significant Others/Family
- Loss of Confidence
- Loss of Control
Loss of the Life Before
When you are diagnosed or when your condition reaches a point where things must change, life gets altered (in most cases drastically). The plans you had, the goals you made; they must change to suit your new spoonie lifestyle. And that can leave one feeling like they just got stripped of everything. When you realize that you are unable to do the things you used to, that you will never accomplish certain things because of restraints placed on your mind and/or body, sometimes a sense of panic ensues. “What will I do now?” “What does life hold for me?” ” What can I do?” Then a wave of grief. “I’ll never feel the same way those activities made me feel!” “I’ll never be able to plan or make goals!” “I can’t do those things anymore!”
And yes, some of those things are true. Sometimes you will not be able to do certain things and sometimes you will not get the same feelings you used to get doing a specific activity. But here’s the thing. You’re life is NOT over. It’s just DIFFERENT. Find new interests and hobbies that are suited to your new lifestyle, support your friends from your ‘old life’ in their endeavors (as long as they are supportive of you still), most importantly don’t dwell on the things you can’t do. Dwelling will only make you feel like crap and will dredge up that same ol’ ‘rugged-ripped-out-from-under-you’ feeling. And that feeling sucks. By finding something new to pour yourself into and supporting your friends in the things they love; it really helps heal your soul. I even found that when I couldn’t do colourguard anymore; just by simply supporting my friends, and going to shows, and liking their guard posts, it helped. I was being apart of the thing I thought I couldn’t be anymore. And ya, to be honest there were many breakdowns over seeing my friends Facebook posts in full uniform on their way to their first college show. But I am proud of them, and happy for them. And in the end that is enough. I still ache to dance and I still get teary-eyed whenever I see a guard or band related post. But I have found new ways to express my emotions and show the world my unique perspective.
Loss of Friends/Significant Others/Family
When all of the sudden your life is completely different and you’re lost, you rely on your friends to lean on. But…some people are complete assholes. Other’s lack the capacity to deal with someone who has problems and can’t cope with a friendship with them. Other’s simply don’t understand your situation. Other’s yet don’t want a ‘complicated’ relationship. In the end all of these kinds of people will leave you high and dry.
Rule Number 1: Screw those people. I don’t care if you’ve know them for 16 years. I don’t care if it is your favorite cousin. Or you have been dating for 5 years. They ditched you during your biggest time of need. They obviously didn’t understand the whole concept of ‘got your back’. You don’t need people like that in your life when you already have to deal with some much other bullshit health-wise. It may sound harsh, but YOU come first.
Rule Number 2: Seek new relationships! Do it! Be brave! Invite people in slowly if needed, and build up relationships by inviting them out first (sometimes you have to put yourself out there a bit). Sometimes you can find support communities on places like Facebook. People that understand your situation often make valuable supports in your journey. And knowing you’re someone else’s support is fulfilling, too.
Loss of Confidence
This is a big one. Being chronically ill can be a big hitter to your self-confidence. Feeling less-than because you feel like you are falling short of someone’s expectations, or even your own. Body positivity is another one. Whether you struggle with weight, body image problems, you have tubes, scars, ostomies, your minus a limb, your hair is falling out. It all feels like extra sucker punches pilled on top of everything. And losing your friends certainly doesn’t help, feeling like you’re not good enough for people to want to be around. Like you’re not worthy. It really takes a toll and screws with you mentally. It can worsen pre-existing mental health conditions.
This one I’m still struggling with myself, so I’ll give you my thoughts but I can’t guarantee anything good. I think the best thing to do is to surround yourself with genuine people. Who genuinely care about you and genuinely want to help you. People who are supportive, kind, compassionate. One’s that will level with you on real shit when you get too inside your own head. Those people; even if they can’t help you, but are just there, that is honestly enough. Sometimes it feels like those people are few and fare between. Also, screw other people’s expectations. Once you know your limits, make careful goals and expectations for yourself but don’t set them to an unreachable height. Be in-tune with yourself. Sometimes it can feel like a full time job maintaining your health, and it feels like a second job trying to maintain relationships and make new ones when you’re sick. So to the people reading this that are apart of the support systems or are friends of people with chronic illness, please I beg you, be genuine. Be strong for them when they can no longer be. Just be there.
Loss of Control
Sometimes, I feel absolutely helpless. Sometimes it feels like the world and my body is turned against me and I am the only one in my corner. Sometimes the decisions you make are made for your body and health’s sake, and you’d rather not have made them…ever. A lot of the time when dealing with chronic illness, you don’t have control. You do things on your body’s time, make plans based around how well you feel, cancel those plans last minute because your body suddenly took a crap.
Again, this is something I still grapple with. I have my faith though, which is a HUGE factor in helping me see things in a broader, clearer perspective. I know everyone has a different view of faith and some don’t have one at all. So I’ll try to tread lightly.
I know my God has great plans for me. He also gave me free will for a reason; I can make mistakes, learn, grow. When it comes down to it I believe we are human creatures, things happen randomly in this human world. I do not believe my God placed my illnesses upon me. But I know through His teachings, through His guiding hands, and most importantly His love, I will be alright. Whatever happens in this human world, I will be alright because there will always be someone who loves me unconditionally, as I am.
But sometimes even knowing that, I still struggle with questions like “Why me?”, “What else?”. It is so hard to feel in control when you really aren’t. But, over time I have learned to ride the waves as much as possible. To be relaxed. Try to take things as they come, one thing at a time. My counselor has been such a big help in that aspect. She has helped me so much with my mass amounts of anxiety and I have found ways to control that overwhelming sense of panic…to an extent. I think I will always feel a bit like things are crazy (because they are) and my world is a massive storm that I’m just flopping around in. But sometimes I catch a current and am able to ride it for a while and maintain stability for a bit. I just have learned to accept some things are in fact out of my control, and I instead focus on what I can control.
I hope I was able to provide some insight for those of you that have spoonies I your lives. And I hope I gave decent ways of dealing with some of the major losses that accompany chronic illness. If you have any tips and ways that work for you let me know! We spoonies have to help each other out.
Love and Spoons ❤