“Just try a little harder”. Every time someone told me this, they meant well. They wanted to encourage me. However, they were also undermining my pain and determination.
It is important to define disability at the very beginning. Using the World Health Organisation’s definition, disability is an umbrella term that covers various impairments that limit one’s activities and restricts participation.
The most common problem I have faced in communicating about my disability with able-bodied people is their tendency to paint it in black or white. The severity of the disability depends on the severity of the impairment. It may be high, moderate, or low. I have experienced being on different parts of the spectrum as my illness, psoriatic arthritis and the associated disability
mobility impairment was progressive in the initial years.
For example, I could reach the middle shelf of the kitchen but not the top shelf. Now I am not able to raise my arms to my mouth and eat on my own. However, there is still some movement in my arms. Disability is rarely at the extreme of the spectrum, with complete loss of the function. Sometimes, even when a disability is visible, it is not possible to perceive where on the disability spectrum a person falls just by looking at him/her.
There are many instances when disability sets in due to chronic pain. Chronic pain can limit one’s mobility and reduce flexibility and strength, making daily tasks a challenge.
Pain is a call for help. It’s the body’s way of fighting back and restoring “normalcy”. Chronic pain usually means chronic inflammation which can lead to extreme fatigue and tiredness. This fatigue itself can be debilitating. I remember telling my doctor once that I would manage my most crippling chronic arthritic pain, but that she should focus on alleviating my fatigue. Many autoimmune disorders like arthritis, vasculitis, psoriasis, multiple sclerosis, etc., can be ridden with severe chronic pain. These illnesses significantly change the body structures and its functions, leading to disability.
The 100% doesn’t have the same 100 everyday
Chronic pain does not remain constant. There are many factors affecting it, most common ones being weather and mental stress. Many patients, like me, find certain foods, certain times of the day and seasons affecting pain levels. The severity experienced can fluctuate every hour for some patients!
Joie de vivre keeps people participate in regular activities in spite of the pain. Yet, the result of our perseverance is not the same everyday. There are so many external factors, even the weather is a game changer. Hence, even as I give my 100%, it’s just not the same 100. My functionality shifts even with the same level of physical impairment and deformities, and with the same will power. When someone with chronic illness cancels a social meeting at the last minute or fails to perform a simple task, it is not because she doesn’t want to or not putting enough effort. It’s just that all her efforts are not enough on that day.
One of the most difficult challenges to overcome is the loss of one’s ability. Processing this loss can be agonising, while, in fact, learning to deal with a disability can, in essence, be liberating. For people with shifting range of abilities, it can be a regular process of assessing one’s abilities. Sometimes, everyday. Dealing with the sense of loss becomes a part of managing the illness, particularly for disabilities associated with progressive illnesses.
One learns over time to plan to keep in mind the right assumptions. These assumptions need to be reassessed regularly.
Unfortunately, in India people with chronic pain come to understand this very confusing nature of the illness through experience. There is no counselling as part of medical management. It is rare to find rehabilitation therapists who are trained to guide someone. Medical professionals focus more on managing the illness and physical functions, while the emotional struggle is put on the back burner. In fact, it is not uncommon for physio and occupation therapists to shame the patient for “not trying harder”.
There are few support groups for people with chronic pain and associated disabilities, and most are online. Without proper education, friends and family often struggle to give the proper support. There exists a gap in the counselling of the immediate community of such patients, leading to further distress. Being disability-friendly is about being flexible. Flexibility can only come from better understanding of the illness and how it affects the patient. Keeping the patient at the core of the discussion instead of illness can offer overall well being.