Dear healthy friend,
Did you know that I struggle every day with being open and honest with you?
As your friend, I want to share myself with you and develop an authentic friendship but my life revolves around my autoimmune disease. Before you are quick to quote some mindless inspirational thought like, “you have it, it doesn’t have you”, let me stop you. It does have me but you wouldn’t understand that because you have never faced a progressive lifelong disease, thank God. That’s a nice little quote and if that thought brings comfort to some or helps them find the urge to fight, then great! But I find it to be hollow and shallow. You see, my life does completely, entirely revolve around my disease. So yes, it would be an honest assessment and not negativity to say that it has me.
That’s really what this is about, the pressure to be positive. I believe in positivity with all of my heart. I know that focusing on the good is exactly what my heart needs to maintain morale and peace in the midst of everything. The problem is, I down to my core, painfully honest, sincere, and genuine so naive optimism will never glaze over my need to be open about the depth of my struggles with being sick.
And don’t worry, I don’t want to talk about how bad it is all of the time, for my sake or yours, but I also don’t want to feel judged by the negativity police when I am being real about how hard it is to have an autoimmune disease. It’s not fair for you to expect me to pretend it’s not difficult because it brings you down or because in your best intentions, you think it brings me down. What really brings me down it trying to pretend that everything is always easy and that it isn’t discouraging and dragging me down sometimes.
I have to carry the weight of chronic illness every. single. day. and sometimes it gets heavy. I am physically and emotionally tired and sometimes I need you to come alongside me and see the battle weary soldier I feel like. Don’t minimize it, just empathize for a few moments so I know that I’m not alone.
I’m not asking you to crawl into a loathsome pit of self-pity with me. I can crawl into those pits all by myself if I want to, thank you. My brain is over-actively introspecting 24 hours a day. I am asking you to avoid trivializing what I am going through by demanding that I always pretend that it is easy in the name of positivity.
So when I have moments of being authentic, don’t rush to assume that I am being a downer or melodramatic. When chronic illness looms over you, you are not being a downer to admit that it is hard and wearisome at times. Nor is it fair to think that someone is melodramatic when talking about the degradation of their quality of life. I can assure you, it is as serious an issue as it sounds.
So I will talk about being sick. First of all, because I need to. I need to because I am way too genuine and true to myself to pretend that my life is not deeply impacted by a chronic illness that I face every day. I am a verbal processor and I need to talk about it because I need to cope too. It’s not easy, knowing that life as I know it will always be ruled by my autoimmune mess. It’s not simple to deal with the complications and threats of complications that loom over me, always threatening to take away even more of my independence and quality of life. I have to handle it the best way I can and for me, that means being real and talking about it.
Second, I talk about it because you, healthy friend, need to know about it. It’s good for you to be reminded how nice it must be to have the energy to make decisions based on what you want to do. It’s good for you to know that people around you are facing battles and need your support and encouragement. It’s good for you to know that chronic and invisible illnesses are real and are serious. It’s good for you to be reminded not to judge people because you know someone who has an invisible illness and what it is like for them. It’s good for you to stretch out of your comfort zone and accept that my struggles are real even though you don’t relate to or understand them sometimes. Hearing my struggles can make you a better person if you let it.
What is a friendship that ignores the realness of our hearts and lives? The world has enough fake people and relationships. Pretense doesn’t sit well with me. I have an intolerance for feigning veneers.
So don’t try to censor me and I will try not to overwhelm you. Trust me, I am working hard to stay positive every day. If I mention that things are difficult, know that it must be bad enough for me to reach out, and be there. Because if you knew me at all, you would know that talking about my autoimmune disease with you has never been about attention or educating. It’s been about trying to be real in a friendship. It’s about being exactly who I am in our relationship and having a genuine bond. So embrace it, and when you learn to accept the reality of my battles, then you’ll know when to encourage me to be positive. And I’ll know that I am not alone or forgotten and seeing the positive side of things may come easier and more often.
An Autoimmune Mess