My Disappearance From Life Thanks To Chronic Illness

My disappearance from life thanks to chronic illness started in July 2021. But if we really want to be technical about it, my ‘official’ journey started in 2009 with my axSpA diagnosis. I had some clues back then that life was going to change for me. By 2015, reality was setting in. You can see I saw the writing on the wall when I wrote 70 Things About My Chronic Illness You Might Not Know. Yet I feel like I still had blinders on then. I knew things were going to get worse, but I didn’t start seeing the big picture until I came out of remission in 2021.

Three years in and I see the big picture now. I’m lonely, sad and heartbroken. Things are not going well. I’m depressed and wavering between trying to be strong and wanting to give in.

How did I reach a point where I’m often too sick to use my power wheelchair outside? No idea, but that’s where I am right now.

Life with one disease is so hard. Living with many diseases is unbearable.

Did you know that one in three adults live with more than one chronic condition or multiple chronic conditions (MCC)? ^Source

When you live with autoimmune disease, it’s normal to have more problems crop up. Autoimmune disease doesn’t just set one body function on fire. It sets the whole house on fire.

The impact of life with multiple chronic conditions is catastrophic. People like me have a higher suicide risk, a higher risk of death overall, and the cognitive issues are terrifying.

My cognitive decline over the past year has been particularly scary. It’s getting harder and harder to make sense of things, to think clearly, to ask questions and organize my thoughts.

Every day I open my eyes and my first thought is, ‘PAIN. How am I going to get through today?’ My second thought is I have no one around me that understands. No one sees what I’m going through. I do my best to keep the mask on and try to look positive.

We read articles about our diseases and the articles give hope. We think, “This disease won’t kill me. It will make things rough, but it won’t kill me, right?”

What happens when treatments don’t work? What happens if we can’t find something to slow down or stop the inflammatory response?

I’ve tried eight biologics in a few years and nothing is working. I’m overwhelmed with fright at what is happening. Words come to mind that I feel I must write down immediately. I want to capture these feelings before I forget them. Ensuring that others have a chance to read them is important to me. It’s my way of being present in life.

My experience is that every time I’ve written something, someone else has said me too.

Throughout the last 15 years of being ill, I’ve shared as often and with as much reality as possible.

I am so grateful for the people who have stayed in my life and have helped me face this with courage. However, it’s also been hard to see friends and family fade away.

My sister and I, for example, haven’t had an honest conversation since 2018. I tried to identify a growing chasm between us and she dismissed my concerns and refused my requests for a call. Then she opted to send an angry and hurtful text message and I was stupid enough to reply to her bait. That was the end of correspondence with my sister.

When you identify problems with relationships and people turn on you, the only thing you can do is leave them alone. They need to figure it out on their own.

This kind of disappearance from life is a common experience when illness strikes. You’d think friends and loved ones would draw closer in times of sickness. Many drift away instead.

And you continue to disappear.

You might be interested in:

When friends abandon you during illness: For many people, unsupportive family and friends during illness are a common occurrence.

My Disappearance From Life Thanks To Chronic Illness

My long disappearance from life, the absence from being able to experience joy, the grief over the loss of losing everything I used to love doing – where does one find the words to describe the loss?

There are times I simply cannot believe I was a world traveler who traveled to 35+ countries and got paid for it. I lived life so hard! I accepted all the invites, loved going to the gym every day; I danced under the moon and watched countless sunrises.

Lunches with friends, the simple pleasure of getting my hair cut, an evening out listening to music, a date night with my husband – all gone and have been impossible for years.

In 2019, my best friend was getting ready to give birth. Even then I was careful because I knew my health was fragile, but I tried to enjoy her pregnancy with her. On her delivery day, I brought her fresh fruit and ice chips. That was my last drive on my motorcycle and I’m so glad that last ride was for her.

Two months later I was in bed and she was visiting me. I could barely hold her newborn daughter by that point. I was able to do one last lunch with her in 2020 and then even that simple joy was gone.

She has been to my home several times since then, but we’ve never left my home.

Day by day goes by in this void

I’ve been on repeat for three years now.

In September I got a call from the hospital at 9:14pm asking me to go in asap. Sure enough, my arthritis and APS was out of control again. This is the second time in 10 months. I was shocked to learn at that appointment that an entire class of meds is no longer an option for me. Anti-TNF medications such as Enbrel, Humira, and Simponi don’t work long for me. In some cases, they’ve created pustular psoriasis which has been a different battle to work with.

My options for treatments are dwindling. As of August 23, 2024, I’ve got five major joints that are filled with fluid. They’re hot, red, and swollen. My joints have been slipping and locking even trying to get into bed to pull the covers up which is utterly ridiculous when you think about it.

The fire of inflammatory arthritis is exquisite. Nothing else compares to that feeling of your body becoming ‘heavy’ again with runaway inflammation. I often compare my arthritis to a Black Mamba: It strikes fast, it’s aggressive and very territorial, and it does not stop attacking.

There’s a reason why rheumatic disease patients were labeled as reclusive at one point in time.

I don’t want to live like a recluse, but my uncontrolled illness means I’m too sick to leave home. I experience significant social anxiety when I do leave home because my heath changes so quickly.

Obviously I live in isolation and have experienced significant social withdrawal in the past three years. It’s not normal to only see your doctor.

If not for friends coming to visit me, I don’t know what I’d do.

Time can pass so quickly when you are chronically ill but it can also feel like it is going slowly.

Weird, right? I blinked and here we are. I’m disappearing. The lengths of time are stretching further and further apart with me leaving the house.

I started a new biologic last week that is kicking my ass. I’m tired, sick, and in pain. It feels like I got an immediate sinus infection. I’m not sure if I need to get it checked out.

More and more, I feel like this disease is going to kill me. I’ve had such a feeling of impending doom, I’ve started putting plans in place.

My will has been updated. I’m working on transferring My Several Worlds to the SAA as a legacy gift. Hosting has been paid up front for a few years. I don’t want 18 years of work, advocacy, and realness to disappear.

So today I’m posting about my disappearance from life.

And tomorrow I’ll post something positive to make up for my melancholy today.

Because that’s how life goes sometimes.

I’m doing everything I can to prevent the fade.

I’m still fighting, friends. I hope you can see me.

Chronically yours,

You Might Be Interested In

• The Great Inflammatory Arthritis Flare of 2022
• Another Disabling Arthritis Flare, Another Move, Another Year in Bed
• AxSpA & Ankylosing Spondylitis Flares – What You Should Know
• Why Friends Disappear When Crisis Turns: Psych Central “Families…feel abandoned but are generally too stressed with the demands of taking care of the child and managing the complexity of the medical, legal or educational systems to give it much attention. All they can do is cope. What goes on that friends, even people they thought were good friends, stop coming around? I think it has something to do with the lack of commonly understood rituals for persistent stress or sustained grief.”