A Chronic Illness Paradox: Healthier but Feeling More Disabled

I recently said in a hospital appointment that I feel more outwardly disabled than ever. That, even though I am ‘healthier’ than I have been in my adult life so far, I feel more disabled, and I feel I now live in a more stereotypically disabled way. And it got me thinking: why? Why does it feel like this?

Disability, like most things, is nuanced and complicated, and I don’t have all the answers. I have, however, been thinking about this a lot since the appointment and have been able to break it down into three potential answers, each using the example of going up/down a flight of stairs.

1.      My World Has Got Bigger

Stairs have been several things over the course of my life: a challenge to conquer, an inconvenience, a barrier to where I want to go, and more now than ever, the thing that could stop me from having a good time. That is, admittedly, quite dramatic. But when I was younger, I went up and down stairs without really thinking about it. Then, as my health declined, going up stairs got noticeably harder. For years I even used my ability to go up a flight of stairs as a marker of my health or a goal to achieve by the end of a hospital admission. Now, by contrast, I avoid stairs. Here’s why…

Standing looking up or down at a flight of stairs leaves me with a decision to make. Should I use these stairs, unnecessary draining my energy reserves and leading to pain in my legs later? Or should I find the step-free, often longer, way round? Unwell me would look at those stairs knowing they would be hard, but back then the thought of walking a longer route round or using energy locating a lift was just as bad. I would often go with the stairs even if it made me get out of breath and I would need to sit down to recover.

But younger me also didn’t have much of a life. When I was a teenager, my world was very small. I didn’t have any social plans, a job etc. that would be negatively affected by draining my energy on using a flight of stairs. These days I am just busier. My world is bigger, and I do more things. These days I tend to avoid the stairs and go the longer way round (or use the lift) because that is what I need to do to pace myself through a busy day.

2.      Isolating Challenges Got Easier

It used to be that my chronic condition made everything hard. With the medical improvements of the last few years, a lot of things that used to be challenging for me have got easier. As my lung health and CF symptoms have improved, I hardly ever get out of breath or have coughing fits anymore, I am better able to manage my chest infections, and I can continue with my life without needing to have regular hospital admissions or spending so much of my days doing treatments.

The point is, as my lung health has improved, a lot of things got easier. But not everything did. While I have seen a huge reduction in many of my symptoms, some haven’t really changed. And now that not everything is hard, it is more obvious which of my chronic challenges weren’t directly related to my chest symptoms after all.

Looking back at our example, using stairs would always leave me exhausted, out of breath, tight-chested, my body would ache, and I’d need to sit down after. Nowadays, my chest is pretty chill with using the stairs, but my legs still ache, and I still often need to stop and rest after the exertion. This is because I still have cystic fibrosis, my chronic illness, and so I still have less energy than my peers. I also always used to think my legs, like the rest of my body, ached simply because of the overall effort. But without all the breathing difficulties, my legs still ache which I am now able to put down to my balance and coordination issues.

Essentially, I know my chest has improved, but my energy levels and coordination are still things I struggle with even if I wasn’t able to isolate these problems back when everything was hard. I have a better understanding of what causes my remaining symptoms which allows me to make more specific adaptations to how I live my life. In this example, I now make a point of avoiding stairs.

3.      This Is for the Long Term

Cystic Fibrosis is a life-long condition which will never go away. But my old symptoms always felt like something that would fluctuate and I could always work to improve. Your chest is in a bad state? Do your respiratory physio, exercise, take your meds, spend some time in hospital. I would follow these instructions and, for the most part, see some results. (It is certainly not as simple as this, but, for the sake of this argument, stay with me here)

Kaftrio, my latest medication, has improved my chest symptoms and has taken away the unpredictability around daily life. Before, all my problems almost felt temporary; I might be particularly unwell one month but why complicate things when I could be better soon. All I needed to do was work to get better and focus internally on myself to get back to being able to live life.

I am now left with the things I have less control over. The problems I have now – for example, energy levels and coordination – are not going to fluctuate in the way my chest symptoms used to. I am now having to contemplate symptoms and challenges that I will likely be consistent and I will have forever which has forced me to think longer term. It has also forced me to stop looking internally at how I can change/improve myself, but externally on what adjustments would help me live how I am. I am disabled and I can’t change that, so how can I change my environment and how I live to make things easier.

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I never used to avoid using stairs, but now I do. This is just one example of a need that has come out of doing more and having a bigger life. If I want to continue to live how I want long term, doing things that make the everyday easier, like avoiding stairs, just makes sense. I am now also able to identify and vocalise this need to others which, I believe, is a major factor in why I feel more disabled than I used to, while before everything was hard so I would just get on with it.

I am not more disabled, there is no such thing. But my mindset has changed which has changed my perception of myself, and other people’s perceptions of me, making me feel/seem more disabled. Now that the pressure of my disability in my eyes and the eyes of others falls on the world I live in, rather than what my body is capable of, I can notice how constricting my environment is and I’m making changes around that. You could say that although I am not ‘more disabled’, I’m living in a more disabled way.