“Invisible Illnesses” are considered such due to the lack of outward “tells”. Those suffering from such illnesses aren’t typically in wheelchairs. We aren’t always considered disabled. We don’t look sick. So, our diseases are deemed “invisible”.

But, to anyone dealing with an “invisible” illness, or to anyone involved in the life of someone dealing with an “invisible” illness, it’s really everything but invisible.

As I write this, I’m well into my 12th hour on my couch for the day with severe abdominal pains. I haven’t eaten anything. I can’t decide if I want to throw up or not. And this has been occurring 1-2 times a week since I started my Humira treatment – which was meant to put me into remission. I mean, the frustration alone is just overwhelming.

An episode like this typically starts in the early morning hours,  usually 3-4am. It wakes me up, to which I grab my pillow and a couple blankets and I set up on the bathroom floor. I might throw up. I might not. But the nausea is almost unbearable. I’ve taken 2 gas-x pills at this point, and I’m sipping on pepto, chasing it with water, and trying not to gag. My cat eventually finds a spot near me to keep me company.

Sometimes Kyle is home and he brings me what I need, and has even made middle-of-the-night trips to our 24 hour Walgreens. Other times, he’s working and comes home to find me like this –

And the sad truth of this photo, is that this is peace. I went to the bathroom feeling all sorts of miserable, and I actually fell asleep. After taking this picture (he thought it was cute!) he woke me up, and I had to ask if I was actually sleeping, because it literally never happens. The pain actually subsided for long enough, that I was able to fall asleep.

Normally, in this situation, my head is bobbing as I nod off into the toilet bowl for the pain to return and wake me back into a groaning mess. Hours and hours later, the sleeping pills or the ativan (that I was hoping would put me out of my misery earlier into this ordeal) finally get the chance to shine and I get to sleep into the afternoon. So, the fact that sleep actually happened here and so early into it was incredible.

The options I had for GI specialists close to me were slim, so I decided to get lined up with a doctor an hour and half from me. That means any time I have an appointment, my mom drives 2 hours to me, and then we drive an hour and half to the doctor. Doctor appointments are literally day-long events.

Kyle has to administer my Humira because I still can’t bring myself to do it.

I sometimes have to miss work.

I miss get-togethers with friends and family.

I cancel plans. Dinners. All sorts of things.

I can’t get anything done.

I can’t stand up sometimes without having to double over in pain.

My family worries about me. Kyle takes care of me. My friends have to deal with it, too.

If you suffer from a chronic illness, everyone’s lives are impacted in one way or another, and they will be forever. Chronic illness is forever. And remission isn’t. You can be fine one day, and sick the next. A treatment plan might work for a few years, and then just stop working. I could be fine soon, and need surgery after surgery in 10 years. I  could need surgery next week and then never feel my disease again. You just never know, and the unpredictable nature of it all is something that anyone in my life now and later will be faced with at some point.

There’s really nothing invisible about an invisible illness, is there?

 

19 Comments

  1. This was eye opening and so relatable. I have several chronic illnesses and often find myself curled up by the toilet like you. Bless you – I wouldn’t be able to inject myself either! I wish you all the love and wellness in your life. We all hope for a cure to these invisible illnesses and in the mean time have to fight our illness and fight to raise awareness and reduce stereotypes. You are a true fighter xx

    • I’m so sorry!! I only deal with asthma and my Crohn’s.. Hearing you deal with several is humbling, for sure! I hope you are doing well, or start to get better at least. It’s definitely a crazy ride.. Thank you for the kind words!

  2. Oh wow, bless your heart. I can’t say that I understand but you are strong for sharing your story. Thank you for being so transparent.

  3. Most people don’t really understand what others go through and it is hard talking about it. A friend of mine also has an invisible illness and she feels as though people just think she is complaining. I’ll show her this post. Hopefully it will make her feel understood. 🙂 Thank you for this.

  4. My heart goes out to you and your family. I can’t imagine what you’re going through, and I’m sending hopes for comfort and relief for you! Thank you for sharing your story.

  5. Thank you for sharing. I really appreciate hearing other perspectives into these things. During my current pregnancy, I was sick 24/7 for the first 16 weeks. It really gave me an appreciation into those who live with a chronic disease. Again, thank you for sharing!

    • That is such an interesting idea.. I never thought to compare it to pregnancy before, but it makes total sense! Thanks for the comment & I hope you are doing better!

  6. I’m sorry for your suffering, and at such a young age. My husband has Crohn’s as well. He was diagnosed a few years ago. He didn’t get any relief from Humira. He has been on Remicade infusions for about 2 years now and is almost in remission. Hasn’t been in the hospital and no bowel obstructions since. Perhaps you can look into this with your GI doctor. Hugs to you! xx

    • Thank you for the kind words! Humira worked wonders on my sister (She has Crohn’s as well.) but hasn’t seemed to solve all of my problems. He’s giving me 6 months before he tries something else though. I have heard a lot of Remicade! I am thinking if this doesn’t work, he’ll just take me through the motions of trial and error until something works for me. I’m glad your husband is doing well, though! Remission is always a blessing.

  7. So sorry you have to go through this, girlie. Massive hugs your way & lots of prayers <3
    It's such a blessing you have such an incredible man by your side. Thank you for sharing this & raising awareness, lovely. It is not easy and many won't know or understand what you have to go through but I really appreciate how honest and open you are about it. Reading this might help someone to be more sensitive and supportive towards some one in their lives who's going through a similar battle.
    Thinking about you & sending you lots of love.
    xox Nadia
    http://www.mielandmint.com

    • Thank you!!! He is certainly a blessing – he’s a huge help and is so understanding. Thank you for being so sweet! I really do strive to be so open and honest – especially with this! There are so many people who have no idea!! xx

  8. Thank you so much for writing this and sharing your story. Like you, I have a Chronic Illness and I often feel like nobody understands what I go through on a daily basis. I will be thinking of you and sending you all of my love.

    La Belle Sirene

    • Thank you for commenting! It’s a tricky situation to be in. No one really gets that we’re sick every single day.

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