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Why I Refuse to Give Up Hope in My Life With Chronic Illness

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Chronic illness may take many things from us. Some aspects of our diseases we can’t control, but there are sometimes others we need to find a way to overcome.

Over the past six months, I have felt like my disease has been winning. I’ve felt like a prisoner in a body determined to weaken me. I’ve even woken up in the middle of the night, struggling to get my breath as pain enveloped my body and extremely strong pain medication induced numerous, unwelcome side effects.

Living with chronic illness has been as much a mental battle as it has been a physical battle.

Late last year, I was constantly in bed for over three months — unable to sit, stand or walk. It was — and still is — the scariest episode of my bone disease to date.

When I was in the hospital during the acute stage of my disease deterioration, specialists were not hopeful about seeing improvements in a hurry. They even indicated I would need to be transferred to respite care rather than a rehabilitation unit — as I would not achieve the basic improvements physically to be eligible for the rehab program. Their concern did little to instill hope in me.

I can’t give up.

The thought of being placed in a nursing home filled me with terror. I wasn’t ready for this path. I’m still not ready. I need to keep fighting while I still have a fight left in me.

I remember lying flat on the hospital bed, staring at the ceiling, and praying for an answer. I needed hope, and I needed encouragement, but no one could give it to me. I had to find it. My body needed to give me a sign it wasn’t giving up on me entirely. It certainly felt like I was moving towards the end of the road. Did I have a choice? Could I turn this situation around somehow?

I could give in and give up, or I could find a way to break free from the bars surrounding my hospital bed.

I decided to play some music — a cross-section of my favorite popular songs and some inspirational gospel music. The familiar melodies began to calm both my mind and my soul.

I began to visualize myself walking, moving, sitting upright, and going home. I began to think back to how I moved prior to this devastating acute disease episode.

With widespread pathological fractures throughout my body, I couldn’t move much before this incident, but I could get off the bed and grab my walker or crutches. I could move one leg in front of the other and sit upright.

I began to visualize doing this again — moving in a way my body was accustomed to, not in a perfect way but in an independent way.

I decided I couldn’t give up. I wasn’t ready to give up. I had to find a way to prove my medical team wrong. I had to find a way to convince my physiotherapist to allow me to try to move my body my way, even if it broke all of the rules.

Please let me try.

The next morning, my physiotherapist came into my room with none of the fancy equipment he had been trying to use to help me stand and walk.

I was actually relieved to see him free of “party tricks,” and before he had a chance to speak, I launched into my prepared speech.

“I want to try quickly getting off the bed, not stopping to sit but instead lifting myself upright onto my walker. I just feel like I can do it with no assistance. I need to try. Please let me try.“

I couldn’t believe my ears. He immediately responded with the words I had hoped to hear.

“Yes, go for it!”

No arguments and no other ideas — just “yes.” He said he’d been thinking overnight and felt we should try something like this.

Yes! My prayers were being answered. Now all I needed to do was execute my plan. I’d say I had nothing to lose, but I really had everything to lose.

I closed my eyes and took some deep breaths. I needed a moment to calm myself and give this everything. I counted to three and launched into action.

Oh my goodness! It worked! I was upright, holding onto my walker. I was standing. My physio was clapping and jumping for joy. I had tears streaming down my face from pure relief.

I had reignited hope. I knew I had a long road ahead, but some improvement was possible. I didn’t feel like everything was useless.

This wonderful moment was repeated in various ways throughout my hospital stay, and I refused to let go of hope. I refused to give up on “impossible” dreams.

You might think coming home after six weeks of being in the hospital would instill further hope in me, but you wouldn’t quite be right.

For the most part, coming home gave me hope until I began to achieve more and more goals. You might think this sounds strange, but the more I achieved, the more I felt the loss of what I wasn’t able to achieve.

Yes, I could eventually shower instead of take bed baths — but not without help and not without excruciating pain.

Yes, I could putter around at home, but I couldn’t help with household tasks.

Yes, I could get dressed, but doing my hair and makeup regularly just took too much out of me.

The more I thought about what I couldn’t achieve, the more I felt a huge hole of loss and hopelessness.

The more I had caregivers visit daily, the more “disabled” I felt. They did things for me rather than me finding ways to do the tasks I needed to do. They took up so many hours in my day that I lost time to do my pain management therapy activities like writing, relaxing with a good movie, and administering my support forum. They were amazing, genuinely caring people, and they were much-needed when I was in my most critical period, but I had improved enough to feel like I needed to unclip my wings.

As my bedroom walls closed in on me in a similar way to the hospital room, I knew I was in trouble. I could feel all hope slipping away again. I couldn’t breathe. My pain was excruciating, and I felt as if my disease was flowing through my veins and trying to kill me. I felt so nauseated and so exhausted.

I was exhausted from pain and caregivers, rehabilitation workers, and cleaners all visiting our home every day — leaving both my husband and I with little time to recover from the trauma of the past few months. We had no time to relax together or watch our favorite TV shows.

I needed to do something about this new challenge. My husband and I needed to create our own routine and move at our own pace, to recharge and digest the events of the past months.

The next day, I woke up feeling slightly better. I had completely rested the previous day because I felt so ill. It worked. It was clearly what I needed, so feeling encouraged, I began to make changes. These changes ensured my chronic disease wouldn’t be able to completely overwhelm and control me anymore.

Over breakfast, I sent numerous emails advising relevant agencies of my decision. Each email gave me a jolt of enthusiasm and hope.

There was still a long road ahead for me, but I felt strong enough not to need outside assistance or personal care. We didn’t need regular caregivers visiting, which freed up three days per week.

Physiotherapists, occupational therapists, cleaners, and dieticians still continue to visit, and they are more than enough at this stage. I can still have caregivers on an ad hoc basis. I have my husband as my full-time caregiver, and together we make a good team in managing my daily needs.

I’m breathing again — breathing a sigh of relief. It’s good to set boundaries and work out what’s best for our situation.

I can now find time to relax and watch my favorite TV shows. As I watched one day, my ears perked up when during an intense scene, one of the actors said, “You’re only a prisoner when you lose hope.”

Those words resonated with me so much. My disease tried to take me prisoner, and as I began to lose hope, it nearly won.

I need to remind myself of my own message to others, that chronic illness can be a part of our lives but not necessarily all of our lives.

I know my disease is going to be difficult to navigate. I know I may have to accept a “new normal” over and over again. I also know I need to be proactive.

I need to ensure I never stop finding ways to safely break free from my disease.

I need to hold on to hope.

Getty image by Westend61.

Originally published: April 27, 2022
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