I wrote this piece a couple of weeks ago and then since it seemed so personal I was hesitant about posting it. Instead, I sent it to The Mighty, because naturally when you’re feeling a bit shy the logical thing to do is expose yourself to an even wider audience. I know it seems a bit counter intuitive, but it felt more anonymous that way. The response I received, though, made it clear that I’m not the only one who feels this way, and since I happen to be feeling this way today, I’ve decided to now share it here.
Loving someone with a chronic illness comes with some extra challenges. Illness is unpredictable, and the important people in our lives understand this. They learn to be flexible and accommodating and we love them for it.
While it might be easy to understand why we’re not always up to going out or carrying on conversations for hours at a time, it’s harder to understand why we might not want your company at all. It’s hard to understand why we might not want you to come help us around the house or give us a ride to an appointment. You’re trying to make our lives easier and we’re pushing you away. It might not make sense to you, so let’s talk about it.
Those of us with chronic illnesses are used to carrying on with life while feeling unwell. We have to, because the unwell part isn’t going anywhere.
You will see me when I don’t feel well, otherwise you would never see me. Sometimes when you see me I’ll be feeling decent enough to be cheerful and bubbly, and I’ll smile in a way that brightens up my whole face. I’ll be able to crack jokes and be engaged in conversation. Other times I’ll seem tired. I’ll still smile, but if you’re watching closely my eyes will give away my fatigue, and you might notice me sitting down or leaning against the nearest surface. And sometimes when you see me I won’t be able to fake it very well. You’ll hear me run out of air while I’m talking and our conversation might be disjointed because I’m so overwhelmed by how sick I’m feeling that I have no idea what you just said. I’ll be trying really hard to hold still so as not to draw attention to myself, but I’ll become increasingly fidgety.
And for the most part, that’s the worst you’ll see me. But it doesn’t end there. You don’t see it because I don’t let you, but it gets worse.
Sometimes I’m too nauseous to sputter out more than a few words, and I sit with my trash basket in my lap because I can’t stop retching. Sometimes I’m so tired I feel like I can’t even hold my own head up. Sometimes I’m scared to stand up or move at all because my head feels so disconnected from the rest of my body that I don’t feel safe on my own two feet. And sometimes I can’t stay still, fidgeting and squirming non-stop because I just feel so sick that I cannot even handle being in my body right then. There are times when being sick is so completely consuming that it takes all of my energy to make it through the next minute, and then the next, and I just cannot focus on anything else.
You won’t see me like that because those are the times when I try to hide away from the real world, isolating myself behind a closed door while I wait it out. Very few people see me like that because I don’t want them around. I don’t even want my mother, the person I trust most in this world, to be around when I feel like that. At times it is unavoidable if I get caught off guard or if I’m too sick to handle it myself, but I do what I can to keep that side of my illness hidden.
This might sound backwards to you. You might think that times like these are when you want people by your side the most. But no. I don’t want you to see me like that.
Part of that is for your sake. I don’t want you to feel uncomfortable, and I don’t know that it’s possible to watch another person feel so terrible without feeling uncomfortable. In the midst of the awfulness I will be thinking about how horrible it is that my illness is spilling over into your life. I know that seeing me so sick will make you worry and feel badly for me and I will feel the need to protect you from that. I will want to pretend that I’m OK for you, but I won’t be able to because in that moment I’m not OK. I will be OK in time, and I will be able to tell you that, but having to tell you that takes focus and energy, every ounce of which I need to just get through it.
And part of it is for my sake. Feeling so unwell to the point of just not even knowing how to handle being in your body anymore is a very personal thing. It makes you feel incredibly vulnerable. Exposed. Helpless. Raw. It feels like you are naked and people are staring at you but there is nothing around you can use to cover up. In that moment, your body is the one in control, not you. And that’s scary. Feeling that way is hard enough; knowing you can see me feeling that way is too much.
So I don’t always want your company, and at times I decline your help. I don’t always let you see my face or hear my voice, and it has nothing to do with you and everything to do with me and the way my illness sometimes consumes me. I promise I will gladly accept both your company and your help when I’m ready. I don’t need to be at my best, but I do need to not be at my worst.
There’s one last thing we should talk about. Even when I don’t want you there, it helps to know you will be there when I’m ready. And I love you for that. Thank you for being within reach.
21 thoughts on “It’s not you, it’s my illness”
Wonderful post. Thanks for helping explain it for those of us who don’t understand. 🙂
Thanks! And by the way I wasn’t able to message you on twitter either but feel free to facebook message or email me! firstname.lastname@example.org
I have primary progressive multiple sclerosis and every word you said rang true. You have so very poignantly expressed what is difficult to explain to others. I sincerely thank you for that.
Thank you, and best of luck to you as you face your own health struggles!
I cried as I read this .. it is so spot on and so grateful that I’m not alone! Thank you for sharing your wonderful gift of words for such encouragement. Bless You!
Hugs and spoons, Susan!
Reblogged this on Seachy Waffles On, Chronic Pain is a game changer and commented:
So brilliantly written and conveys a mixture of emotions we feel, especially against/with our partners who we love dearly and are really lucky that they have chosen to love a spoonie!
I’ve been following your blog for a long time now and never comment but had to on this one. Thank you for sharing your beautiful words. They brought me to tears I felt so overwhelmed by finally being understood. It’s so hard to watch as family and friends do not understand and change or disappear. I hope I’m explaining myself enough but I’m either not or they just can’t tolerate it. And that’s fine. We all have our limitations and as we both know, you don’t get it til you GET it. Thank you as always for taking the time to share your beautiful words and your beautiful soul. I really appreciate you.
Hi Anya – thank you so much for this comment! I really am very touched by it. It can be so hard when it feels like no one else understands, so I’m humbled that I was able to make you feel understood and I hope that as you carry on in your life you will be connected with more and more people who can do the same. Hugs and spoons to you.
“It’s hard to understand why we might not want you to come help us around the house or give us a ride to an appointment. You’re trying to make our lives easier and we’re pushing you away. It might not make sense to you, so let’s talk about it.”
Must be so hard for folk!
You are extremely eloquent in what you said and the way you said it. Thank you for opening up your heart with words that will help all of us.
I couldn’t have explained it better, Catherine. The words that resonated most were
“There are times when being sick is so completely consuming that it takes all of my energy to make it through the next minute, and then the next, and I just cannot focus on anything else.” I like the way you have finished by reassuring our friends,families and helpers about what they CAN do to help which is to be there when we are ready and to be patient. Those who really care, will accommodate the needs of our illness. Those who don’t get it were more hindrance than help and are no longer in my life because my energy is too precious to waste. I want to use my energy on the important people and things in my life. I love being with my friends but I don’t want to see them when I am too sick and don’t have the energy to give them my attention properly – I feel that it is disrespectful to not be able to pay attention. They may insist that they don’t care if I fall asleep mid-sentence, but I DO!
I also find that after a week of home helpers, medical appointments and dealing with people to manage my illness, the last thing I want at home is more visitors. I just want time for me, myself and I to recharge, (ready for another week of dealing with people). It frustrates me that I often have no energy left for the people I WANT to see after it has been spent on the people I NEED to see.
Thank you for putting our feelings into beautifully well written words. It makes the feelings a little less frustrating when you hear another person saying them. Your blog helps me share these really difficult moments with friends and family when I dont always know what to say so thank you for that.
I’m so happy that I am able to help you in even the smallest way. From one POTSy to another, you’re doing a good job!
Reblogged this on Invisible Pain Warriors and commented:
YES! This is brilliantly written and so very true. 💜
Agreed with April. This is spot-on. I have an invisible illness and this quote particularly resonates with me the most: “You don’t see it because I don’t let you, but it gets worse.”
Beautiful and spot-on. Thank you.
From a fellow chronic illness sufferer…this is excellent Thank you for expressing it so well
I am a mother with someone who has a chronic illness. I understand, I really really do. Hang on in there, with love
As a daughter of a mother whose heart breaks when she sees me like this, thank you for everything you do ❤