How to Live With an Invisible Disability
Living with an invisible disability involves an ever evolving coping process. It involves dealing with guilt, depression, fustration, anxiety and anger. Because it is invisible to others means it can be doubted by others, leading those who suffer to do so in silence. They feel they will be judged by others as being chronic complainers or lazy. In fact, they may begin to feel ashamed for being ill leading to more and more isolation from others. So how do we cope and live with an invisible disability?
You Are Not Who You Were
1) Do not get lost in the past. Sometimes we can fixate on days past when we could do so much more and be so much more. It seems everything is limits and compramises. Yet, we cannot live as we once did, with the same lifestyle, ambitions and goals. To do so creates more suffering and stress as we cannot live up to the image of our past selves. Which then leads to guilt for not being what we once were, what society expects of us, what we believe our family needs of us. Instead, we must define our limitations and live a life suited to them. It may mean we have to make adaptions to our work envioment, change our career, work part-time and alter some of our lifestyle habits. It is not about being less or doing less. It is about having unrealistic expectations.
Do Not Let Guilt Cripple
2) Guilt can be overwhelming. We have this idea that we 'must' be a certain way and we 'should' be able to do certain things. We all make assumptions about our self-worth and what it is to be a functioning member in the world. Yet such assumptions can be destructive, such as, 'I need to work full-time or I am worthless as a person. If I cannot work then I am a burdan to my loved ones and society', thus defining you very worth on a job. The guilt for not being able to meet our assumptions is powerful. We can believe we are letting down our employers, our co-workers and our family. Our health and coping with our disability are the most important thing. Pushing ourselves to meet our self-imposed expectations can have horrible consequences, from depression, anxiety, suicidal ideation or actions.
Make Simple Lifestyle Changes
3) Simple lifestyle changes. A doctor will prescribe medications, but he cannot help us cope from day to day with a condition that cannot be cured. We need to have our own plan of action and create a lifestyle that is healthy and with less stress. Light exercise involving short walks and stretching can make a difference in pain levels, mobility and mood. We must cultivate and keep a link to the outside world, actively connecting with family, friends and making sure we leave the house a few times a week. We can take vitamins, herbal supplements and quit smoking. We can add in some alternative methods to deal with our illness such as massage therapy, physiotherapy, yoga or chiropractors. One simple change then leads to another, which then become healthy habits. While there may be no cure for our illness many small adjustments help with living with disabilities. We may not be able to control our health but being able to control some aspects of our life to improve our overall well-being can ease the frustration.
Never Underestimate Emotional Wellbeing
4) Emotional wellbeing is as vital is physical wellbeing. Invisible disabilities and chronic pain carry a huge emotional weight. Seeing a psychologist is an excellent idea. We are not crazy and our illness is not 'all in our heads'. However, sometimes it is helpful to have someone on the outside guide us to positive coping strategies. We naturally develop our own coping techniques and defense mechanisms to survive, but some of them are in fact counterproductive and even maladaptive. A psychologist can help us understand when we are being unrealistic, have unrealistic assumptions about our worth and health and when our negative thoughts hinder our coping.
Facade of Well-being
5) The Facade of wellbeing is something we can accomplish simply because people cannot see our disability. Therefore, putting on a facade of wellbeing is a way to distance ourselves and others from our pain. In a way it is necessary in order to get through a work day because focusing on our suffering all day will make it that much harder to deal with. However, it becomes counterproductive when we always refuse to show how much we suffer thus enhancing the 'invisible' aspect of our illness and increasing the sense of isolation. When we are inclined to hide our pain, or underestimate it, from family and friends it is because we know they cannot help us get through it and we do not want to burdan them with the truth of the matter. Yet those are the very people we should communicate with as they will give us the most support. At times it is easiest to set up a way to inform our loved ones of the level of our pain without having to give to much details, such as 'It is a 8 pain day' or marking a calendar with a number to reflect that just so people know where you are at.
Do you hide your suffering from others?
Find an Outlet
6) Finding an outlet. We need to do something with all our intense emotions and fluctuating moods and finding a positive outlet is key. Venting or ranting in a journal is one thing, since once you have set those emotions and fustrations to paper it is a release and will reduce your stress. Another way is to find a hobby you are passionate about, whether it is writing, painting or scrapbooking. Support groups and online forums also help because then you are sharing, getting sympathy or coping tips from people that have the same issues, which can relieve that sense of isolation. Just knowing we are not alone is sometimes all we need.
There is nothing simple about living with an invisible illness. There is no set path to coping. No way for others to know how we are coping or the struggle we have every day. People will sometimes think we are chronic complainers or lazy. They can be judgemental and believe if only you did 'this thing' or 'that thing' you would feel so much better. However, if we take care of our emotional needs, along with our physical, understand our limitations and find a positive outlet then hopefully we can avoid depression, desperation and despair.