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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Russell Hillabrand
    3 years ago

    Hello Rachel! Thank you for sharing your story! I especially enjoy the ending. To take a positive spin on your condition, to be self-affirming, is very important to me. As you said, it gives you the “freedom and power to pursue the best life I can make for myself.”
    I have been studying philosophy and religion for the past few years, and it has helped me develop a similar approach. I hope to write from my experience as I have tried to stay self-validating like you.

  • Luna
    3 years ago

    “made me feel so alone and so misunderstood”
    Most people I come into contact with have a small concept of migraine, pain and nausea but no concept of the whole body experience. So it is almost impossible to explain no headache (silent) migraine. Especially when the brain is all messed up from “toxic” air. The words are in the brain but won’t come out the mouth. Or I understand the concept but can’t put words to it. So frustrating. Usually the best I can do after stumbling around for words is to say something about the brain isn’t functioning just now. Either people accept it or not. It makes no difference to me. This is my life and as you say it is up to me to make the best of it and “work as hard as I can to get better”.

  • DonnaFA moderator
    3 years ago

    Hi Luna! Speech and language symptoms are especially frustrating. The concept you’d like to communicate is floating around in your brain and there is no way to share it. Thanks for being part of the community and sharing your thoughts and feelings! -All Best, Donna (Migraine.com team)

  • jcanchor
    3 years ago

    I’m glad the intensity of your migraines has lessened, Rachel. I think we are able to think more clearly when the migraines come less frequently. It is encouraging to read of other peoples’ journey with migraines. I appreciate what you shared.

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