Does diagnosis matter?
I chatted last night with a fellow chronic illness warrior. We covered everything from how we were diagnosed, to how long it took to finally have an answer, and how we felt when the doctor eventually whispered its name to us. But, I had one thought that kept re-generating in my head after we chatted, so simple, yet so complex. What are we doing now that the illness has a name and now that name looms in our bodies all day and all night? That thought festered into, were we relieved? Did having a diagnosis make it easier? What has it really changed? POTS. LUPUS. MS. Did it matter in the end?
It took 2.5 years to get a Pots diagnosis for myself. I am now in limbo with yet another possible autoimmune condition, which has thrown me into a tailspin for the last few years. I am in the middle of the medical web of referrals right now, where I am the lead detective, hunting down whatever leads I get, trying to attach a name to the perp that has alluded me and stolen valuable health hours away from my life. If you were to come over to my house, it would be akin to seeing those forensic cops connecting the yarn from suspect to clue, to yet another alternate suspect. All the yarn connecting to one invisible mug shot. Who are you that has evaded me; I have often whispered. Show yourself! The one thing that I have learned since my initial diagnosis over 10 years ago, is that you have to advocate for your own self. No one else can do that for you. I have always felt that I was doing just that, advocating for myself. But, after my chat last night, I realized I wasn’t. Not even close.
I wasn’t advocating for myself
In the conversation with my fellow warrior last night, we shared a laugh when we discussed the luggage that we both drag around to other places if we go out. I know I touched on this in the blog ” 5 things to know about pots”, but we chatted about how backpacks and heating pads and other essential items had now become a part of our daily wardrobe. My backpack was my lifeline. It held everything I needed to sustain myself throughout my day. Except, it wasn’t true. After our chat, I realized that a majority of these items I end up stuffing into that bag, was needed because I would ultimately end up failing to take care of myself. I was failing to listen to my body. Failing to do what was right for me. I wasn’t packing the right stuff into my bag, because I wasn’t packing the right bag.
Self-advocating doesn’t mean your not self-neglecting
In the traditional sense, I was advocating in front of all my varied doctors and therapists, and who knows how many other professionals I had been to over the years. But outside of that medical diagnostic game, my aim was to give myself a life. Give my girls and husband a great mom and partner. Be a great friend. Be a great daughter. To live to the fullest. To explore. To dine. To wine. To have the clean house. To provide an income. To keep the kids active. To host the best party. To be the one who always says yes to going out. To making others believe that I didn’t have an illness. If they can’t see it, I could hide it. To ultimately paying for it later. Truth. Out of fear of having to make my husband leave a party or evening early I would suffer. Out of fear of my kids not getting enough fresh air, I would stand out in the cold longer and suffer. Out of fear of say no, I would walk longer or farther than I should. Out of fear of being a nuisance, I would sit on the high stool at a restaurant, knowing that my legs dangling down for two hours would hurt me later. Out of fear of looking dumb, I wouldn’t lay down at a friends gathering, when I clearly needed to. I would stand in the sun, knowing my body was overheating with an inability to regulate itself, just so I wouldn’t feel rude leaving a BBQ. It goes on and on. The ending was always the same. I would then, unzip my pack and use it all to try and recover, or I would head to the hospital.
Nobody is asking for you to do all these things
The worst part is, not one person ever put these expectations on me, except myself. I failed myself. For my own egotistical gain, I ignored the fact that I had a condition. I didn’t want it to exist, so I carried on and had the attitude that I would just deal with it later. No one would know, and I would keep up the illusion of someone with her shit together. For what purpose? Would these people really care if they knew how I really felt? The ones I align myself with, all know of my condition, and would be understanding, but I didn’t give anyone the chance. So I chatted with my husband last night, and started owning up to all the times I should of said no. All the times I should have left the party early. All the times, I should have stayed inside, or moved to the shade, or just not cared what other’s thought. I started compiling a list of things that I need to start doing for myself.
How I am planning to change? (A few items off of my list)
- Take 2 cars to events, so I have the option of leaving early without feeling bad about taking that time away from my husband or friend that I am out with. (They would come back with me, but I don’t believe they should always miss out on my account either)
- Don’t go to events in the middle of the day, during the worst heat of the summer. Sounds simple, but I say yes to these events all the time, and I pay for it. Instead, say yes to the events early in the day or later in the evening when the temperature is more manageable.
- Ask for a table with chairs instead of stools.
- Lay down at a cocktail party, and stop giving a shit who has to step over me.
- Stop hosting, and allow myself to be hosted once in a while. (this one is hard for me)
So does diagnosis matter?
So to answer the question, does a diagnosis matter? Yes, it does. It gives you answers. There is relief, but that also comes with fear. Fear at knowing you have to find a way to live with this in your life now. Does it change anything? It can help you manage your symptoms easier, but in the end it is YOU that manages everything. You manage the outlook on your illness. You manage your daily outcome. You manage your thoughts. You manage the life you want to present to the world, and the life you want presented back to you. So stop neglecting yourself. Put yourself first. Trust in your friends and family. The ones that are meant to be in your life will not resent your shortcomings, but embrace them and help you live your life as much as you can. They will allow last minute restaurant changes, or let you sit in the shade while they sweat it out in the sun instead. They will sit with you while you rest your legs, and they will take you home early if you just can’t handle the pain anymore. They don’t need a front. They take you as your are, and that is enough. So I consider this blog, the start of my journey in learning how to not neglect the very thing I demand my doctors find. Me. Do I still need that backpack? Yes, but maybe now it can be a little bit lighter to carry around. Packed properly to sustain me, and not to rescue me.