Learning to own my illness and my care

Hi there fellow migraine suffers. My name is Rachel and I have suffered first with episodic then with chronic migraine for almost 20 years in total.

My migraines started in my pre-teens as moderate and episodic and then increased in severity and regularity into my mid-twenties at which point they became chronic and the pain levels reduced somewhat. Whilst the pain is not as bad as it used to be I suffer on an almost daily basis with prodromal, aura, migraine or postdromal symptoms to the point where I feel spaced, sick or thick almost all the time. I also battle with side effects of my preventative, acute and abortive medications as well as additional medications I now take for complications arising from the treatment of migraine.

The most difficult part of living a life with chronic migraine has changed over the years, first I had to come to terms with the regularity and longevity of my condition, I had to deal with being thought of as a person with a substance abuse problem, being considered a liar by those closest to me, finding a doctor that believed me, finding a medication that has in any way assisted with my migraine, living a ‘normal life’ with a chronic illness and balancing and weighing the benefits of medication over its side effects.

At this point in my life I have made significant improvements. My migraines don’t hurt as much as they used to and I have found a medication that has reduced my migraines from daily to an average of about 15 per month. They also don’t last all day. Sometimes my ‘attacks’ will only last a coupe of hours or so. These days I don’t feel like a sick person, I just feel like a person that gets headaches. But it’s still hard. I will still have stints where my head hurts so bad or for so long I feel I can’t continue. I feel trapped by my illness, limited in my lifestyle choices, like I can’t escape this thing that has me in a constant cycle of illness and recovery.

But the hardest part for me today is also where I draw my capacity to continue. This is coming to know that in my experience of chronic migraine, I am alone.

I can try to explain my condition, try to demonstrate the impact that it has on my life, point out to my friends, family and colleagues what I am going through and how it limits me, but I can't expect anyone who hasn't lived with chronic pain to understand. It is hard for healthy people to comprehend what it's like to be this sick, not know the cause, have limited treatment options and never get better. This isn't the trajectory of most illnesses.

For years this has isolated me, made me feel so alone and so misunderstood. But I am slowly learning what has always been true. I am alone in this and that's a good thing. As I have slowly started to come to terms with this, I have slowly learnt that I can help myself. I can be self validating, I can recognize my own needs and try to fulfill them, I don't need anyone else to understand or comprehend the experience of chronic illness. And in this I have freedom and power to pursue the best life I can make for myself, give myself comfort and respite and work as hard as I can to get better.

When my quality of life is in my hands, I can decide the best possible outcomes for me.

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