Personally, the toughest part of being diagnosed with POTS was learning how to let go of the life I had planned for myself, the life I hoped I would have by now. I imagine this is the same for many other medical conditions as well. For the most part, I have adjusted to the idea of dealing with all of these symptoms everyday, and all of the medical testing and time I spend in the hospital is almost normal for me now. However, when it comes to where my dreams lie and the goals I had set for myself? Letting go, and adjusting them, has taken me much longer to accept.
It's no secret that everybody has dreams and goals they set, generally with a broad deadline for when they would like to accomplish them. I was no different. I had hoped to get my license, go to college, get a job, etc. I was sick for a very long time before I reached a diagnosis, and while I knew during that time there was no way I could accomplish any of those goals, I still had hope that doctors would find what the cause was and fix it.
When my neurologist first told me he suspected POTS was the reason for my illness, I was confused more than anything else. I didn't know what that meant, but part of me was relieved that there was actually an explanation for what was going on with me. After we came to a solid diagnosis, I spent a lot of time trying to find out more information about this syndrome I had never heard of before. The more I learned, the more I realized what kind of future I was most likely going to have.
Now, I'm not saying individuals who suffer from an illness have no future. I absolutely believe in my future and have a lot of hope it will be a happy one. However, I do realize how much determination, work, and strength it is going to depend on to get there. This is the part I've struggled with the most – letting go of the ideas that I had for myself when I was healthy. Having an illness doesn't mean you can't get to where you want to get to, or that you can't do what you want to or be who you hoped to be. It does mean you're most likely going to have to find a new way to accomplish those things though.
The frustration comes from knowing it'll be much harder than it was originally supposed to be, but frustration is actually good. Frustration means you're grieving, grieving the life you were supposed to have, and that is completely normal. Frustration means, whether you realize it or not, that you're slowly beginning to accept your new life and future.
Acceptance is a very hard thing to experience. Regardless of the situation, accepting that everything is going to be different and nothing will be how you expected is going to be a major challenge you experience in your life. Don't ever think it isn't possible though, it is one hundred and fifty percent possible. There is no time line for grieving, whether it's grieving a person's death or grieving the loss of something very important to you. For me, grieving happens multiple times. Every time I have another test to determine if I have an underlying condition, or whenever the doctor gives me that “this should be working by now” look and I feel hopeless and stuck all over again, I grieve.
Every time something changes and I'm expected to just go with it; a new diagnosis, more medication, uncomfortable testing or treatment, another goal of my present pushed further into my future. I feel helpless, hopeless, frustrated, heartbroken, and just straight up angry sometimes. So I throw myself a pity party. I cry on and off all day long and feel miserable for what my life has become, I think of all of the things I've convinced myself I'm never going to have and I get angry that this has happened to me. And then I pick myself back up the next day and remind myself how blessed I am for all of the things I still have.
A lot of chronically ill would probably wish they never got ill, but at this point I'm glad I did. Sure, there are plenty of days where I hate everything about this, but there are so many blessings that have come into light because of being so sick. I've learned all of the people I can rely on, as well as all of the people I shouldn't have trusted to begin with. I've learned multiple ways to do different things. I've figured out new hobbies, and I've had the chance to develop new talents. I have the chance to spread awareness for these frustrating conditions, and I have the chance to let others know that they are never alone. I've learned so much about my government, disabled individuals, the spoonie community, and how society reacts to young, sick people. All of these have been incredibly important lessons for me and I would be afraid to meet who I would have become without learning them.
The point is, at the end of each day, there is one person you have to be on good terms with, and that is always yourself. It does not matter what the world thinks of you, what your parents think, what your partner thinks, your siblings, nobody else. You have to be the one that loves yourself, the one that is content with your decisions and actions, and the one that is happy overall with the person you are. If any of those aren't true for you, then you have to start thinking of what needs to change for you to get there.
Is it a person bringing you down? Are you always giving all you've got to others and never yourself? Is it a situation you've let go on for too long? Whatever it may be, allow yourself the strength to change it, and the faith that it will work out in your best interest. Don't ever let anybody tell you that what you're feeling is wrong, regardless of the circumstances. As a human being, you are allowed to feel whatever you want, whenever you want. The only thing you can control is the people you allow around you as a support system. If they aren't supporting you, what are they there for?
Remind yourself everyday that you are strong. You are going through something most people could never even imagine surviving through, and you are brave for doing so. Letting go of whatever you had before is okay, it's hard and painful and it just downright sucks sometimes, but it is okay. It is okay to feel all of the emotions that come with that too, I promise. We are all in this thing together, and if by some miracle we all get better out of the blue in the future, just imagine how much we'll be able to do after this experience. If nothing else, being chronically ill is teaching you what is really important in your life. It is putting your life into perspective and forcing you to make a decision.
What I've learned about myself through this are the things I really want to do. Most people my age are partying on college campuses, and at crowded bars. I don't have that choice anymore, but I've also learned that I don't want that choice. On the rare occasion that I do receive an amazing opportunity, I make sure to never waste it because of this. I see a lot of people my age wasting opportunities, and I've become a person that just can't do that, and for that I am grateful. Allow yourself to grieve, but also allow yourself to feel okay with your life again. It is okay to fall apart from time to time, but it is not okay to stay there. You learn a lot about yourself each time you pick the pieces back up, and each time you get a little stronger. All we can do is keep hoping, keep trying, and be there for each other. Remind yourself that you are never alone.
And as always, rest easy spoonies.
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