Even People with Chronic Illness and Pain Can Have Fun


When I had my last baby, died, and was revived, it stands to reason that I was in really rough shape. I can’t really remember a lot from that time but when I look back in my earlier blog posts on my personal blog it sounds like I was really struggling in several ways. Not only was I dealing with awful depression, anxiety, suicidal ideation, and PTSD (which I still deal with even now, aided by therapy and medication), but I also had an entire list of disorders and illnesses that I was being diagnosed with on a regular basis.

As it turns out, dying and coming back does a lot of strange things to your body and mind and, so far, none of them have been fun or useful.

Even People with Chronic Illness and Pain Can Have Fun | Duluth Moms Blog

Some of the things I deal with are minor and annoying, some are really debilitating, and some are just really hard to manage. Like Diabetes Insipidus, which isn’t dire but means I crave ice cold water ALL of the time; it’s that feeling when you’ve run a marathon and are so completely dehydrated (and then you drink a ton and subsequently pee… a lot). Sheehan’s Syndrome is really awful. The basic explanation is my pituitary gland was destroyed and it no longer produces hormones. So, while not having a menstrual cycle is nice (the subsequent hot flashes and other menopause symptoms without being in menopause isn’t very cool), not having cortisol is the worst. (Cortisol is a big deal for your body and it keeps so many things functioning.) I also have Secondary Adrenal Insufficiency and Rheumatoid Arthritis among many other things.

You know when you’re getting the flu and you feel like you have a fever, a headache, overwhelming exhaustion, your entire body just aches and you just have the feeling that you’re in for a doozy of a flu?

That’s me. Those are my good days.  

On bad days it’s all of that times ten (basically when you think you’re going to actually die of the pain and you’re wishing you had just gotten that flu shot months prior). On bad days I can’t engage with my children. I can’t concentrate or listen to what others are saying. On bad days I can’t really get out of bed, I can’t eat, I can’t stay awake, I can’t do anything.

And, PLOT TWIST, sometimes I am having a good day and just feel run down but I’m at least mobile, and out of nowhere, I’m sicker than sick. I’m not cognizant of my surroundings, I’m easily confused and disoriented, I feel like I’m melting into the floor because I’m so tired and I have to find some place to lay down right now, and I know my day is now done and I will now be unable to do anything for hours, if not days.

All of this is to say, I try to take advantage of my “good” days.

I try to hang out with my kids, I try to go to a park, to go to a zoo, and we try to plan our family things around good stretches. Oftentimes we plan things at the very last minute because if I have a stretch of bad days, as soon as I have a good one, we go. My husband and kids didn’t ask for any of this and I feel guilty making them always stay home because of me. A lot of times I will suffer through (and pay for it for days and days), or I find activities they can do that I can sit and watch them off to the side. I can’t be in the heat or sun for too long otherwise I get terribly sick. I have to constantly have water and be near a bathroom, I have to have all of my emergency kit medication should I go down for no reason.

Unfortunately, I’m a really uncool person to hang out with now.

What I’ve learned is that people really don’t like it when a chronically ill and/or depressed person has fun, or even looks like they might be having fun. One of the top things I hear when I tell someone I have severe depression is, “you should go outside into nature more”. If I do that and, god forbid, take an Instagram photo of myself smiling outside the confines of my house, people will say “obviously she isn’t that depressed, look at her!” It’s really frustrating.

This past summer, our family went to Missouri for our annual road trip. Overall the trip was pretty good and we can say we’ve been there and cross it off our map. What the Instagram and Facebook photos don’t show are the nights that I fell asleep by 8 p.m. because my body couldn’t handle the pain. The ice packs on my hips because I hurt. My fingers, toes, and ankles so swollen from the walking, crying in the shower from the overwhelming feelings of trying to be happy for my kids all day when inside I just really want to die, rubbing pain cream on every joint possible on my body, taking pain medication so I could walk around a theme park, not urinating over the course of 12 hours despite drinking obscene amounts of water, and having intense kidney pain, throwing up from pain after walking around a zoo for four hours, not being able to cuddle with my three year old because even the hair on my head hurt, and screaming at my family on our last day because my anxiety, panic, and depression got the best of me.

Even People with Chronic Illness and Pain Can Have Fun | Duluth Moms Blog

But people saw pictures of me smiling ear to ear, looking like I was having the time of my life, and made a judgement about me based on one picture.

Alternatively, if I were to not do any of those things and make any of those sacrifices and just stick to my house, in bed, what would people say? They would say I’m not doing enough to get better; lying in bed isn’t going to help anything.

It’s clear no matter what a depressed and chronically ill person does, they can not win. There isn’t a solution that appeases anyone. Don’t get me started on the “you don’t look sick, you look great!” because that’s another level of frustration I haven’t yet found a good way to deal with.

I’ve come to the point in my life that I understand that it isn’t my job to apologize for someone else’s judgements or bad behavior. If you do something and later feel guilty, it isn’t my job to lay your guilt to rest. It isn’t my job to convince you I’m worthy of kind words because of my daily struggles. And I won’t. I won’t do any of those things. The saying of “you never know what someone else is dealing with” is absolutely true. Instead of saying, commenting on someone not looking depressed or sick enough, you can say, “Oh that’s great, I’m glad she had a good day and was able to do that” and you know what? You’ll feel better. You won’t have that anger or annoyance in the pit of your stomach and you can move on and focus on the good things you are doing.