Dear Person with Chronic Migraine disease:
I understand this battle can be exhausting and frustrating.
It never seems to end and your days seem hazed with pain such that life just seems this existence of merely getting through those painful moments and nothing more. Such that the compromises you have made to endure this struggle seem to have shrunk your life more and more to just this core essence of survival. And yet all this effort can still be mocked by all those who do not see how hard you struggle to survive and all the things you do to get through the day.
In our darkest moments, this pain does seem vast and all-consuming. It has taken all our past and will eat all of our future. We know this isn’t true, however. We know it rationally, but the pain can consume all reason at times. We just know how demanding that pain is on our minds to make us believe it is true when we are suffering. Never for a moment believe it is consuming you because you are so much more than that pain and so much more than the struggle to endure it. One of our greatest battles is staving off this feeling that the pain is winning and we must fight this battle too, at any cost.
We must do all that we can to reduce our suffering, even when we cannot reduce the pain. We must seek out anything that helps with this, no matter how minor, no matter what others think about the methods we use… if it helps with our suffering we must use it because this dark, heavy feeling in our most horrific of painful moments that it will never end, that this is to be our existence forever… is false. It is a lie. We are more than just the pain. And we cannot let the suffering consume us either.
I know the pain is isolating. You feel that it can never be understood.
You have felt the sharp bite of stigma in many areas of your life. Know that your loved ones love you even if they cannot comprehend all aspects of this struggle. Know that they care about your life and maybe they do not know what to say or do all the time but this is a difficult thing to do. No one always knows what to say or do around someone they love who is chronically ill and will never get better.
They want to help but don’t always know the way or the words. And maybe they fail to find the right words sometimes but they still love you. Know that their presence in your life, and yours in theirs, is important and vital and not to be underestimated. You have value for who are and not what you can do. Know that it is an extremely difficult thing for loved ones to see someone they love in pain that they cannot conquer and this is difficult for them as well.
I know the stigma we face in this world is difficult to manage.
There are times when you will face doctors who do not understand the scope of your pain and the impact of this disease and know that it may be better for you to seek another doctor than to get him or her to comprehend it. Know that it is important to have a level of comfort and the ability to communicate with your primary physician. If you feel diminished and ignored it is not better to be stoic and stop mentioning your symptoms or pain… it is their job to treat you, not feel comfortable with your disease. Doctors and neurologists will have problems treating conditions with no cure. It is a simple fact they will eventually come to a point where they will become frustrated with our lack of progress, perhaps even seeming like it is your fault, perhaps even suggesting it in some way.
Understand that it is their job to treat these illnesses and if they cannot handle the ones with complications and complexities, they are in the wrong job. However, be open to alternative suggestions and changes to your lifestyle as we can never know what will have an impact on this disease.
I know your frustration at facing stigma in the workplace. The stress of working full-time with CM is vastly misunderstood. I could recommend open communication with your employer about workplace accommodation and flexible hours but you likely have already tried that. You likely have already sat through some unpleasant conversations with your employer about your productivity or absences. Know that you should never be made to feel guilty for that which you have no control over. Even if you comprehend the difficulty of their side of things understand that people are permitted to have diseases and illnesses and be employed and they would never treat someone with other diseases such as cancer that way. Know that you have rights as an employee. And please understand that there may come a time when you have to make alternative career choices or work part-time instead for the sake of your physical, mental and emotional health… and that this choice doesn’t make you worth any less as a person but rather means you will survive this chronic pain battle better.
In the end, there are no wrong choices here.
There is only what helps you survive. There are only the strategies that get you through the day. What helps you cope. What makes you suffer less. We all break down at times. We all falter. In the end, we get back up to fight another day. And we are stronger in our broken places because we know what it is to survive, to fight, to endure. I don’t want to say that mere survival is the aim but it is sometimes all we can manage at times. We can achieve more than a mere existence of survival though. Part of our coping process can be fitting things that give us pleasure into those cracks within the pain. Part of our mental and emotional well-being trying to find ways to manage our suffering. Until hopefully we have this life in there… a chronic pain life… but a life. And that is something to aim for while we hope for effective treatments. And that is what I want for you and everyone like you… to have a life beyond survival, to reduce your suffering in any way you can, to continue to fight at all costs and to hold onto hope.