I made a list of seven questions and put my husband to the task of honestly answering them. He took the questions, answered them, and instantly worried it was too raw or harsh in some aspects. You may see some of his points that way yourself, but the key to remember is this is his opinion based on our experiences of living life with chronic migraine.
What is the hardest part about being a caregiver to someone with chronic migraine?
This is likely to vary depending on whom you ask but for me the hardest part of being a caregiver is the feeling of powerlessness. As a former infantry and combat veteran, my mind functions in a format of identifying a problem and then do something about it, fix it. With my wife’s condition, there is nothing I can do to physically help her aside from being a shoulder to cry on or to hold her and tell her that it’s going to be okay. Beyond that however, I am left to watch her suffer in a pain that seems to eat away pieces of her soul and watch helplessly as she goes through phases of feeling like she has no worth or that she is a burden (which is quite the opposite of the truth). Being in that position, completely powerless to help her, is the hardest thing I’ve ever experienced.
Avoiding triggers changes one’s life
Do you think chronic migraine has changed the individual?
Absolutely! It has changed her in many ways; some positive and some negative. Her condition drove her to seek out people who suffered from the same or similar conditions. It drove her to later help create a start-up non-profit, which she still does to this day. Ultimately it has made her a more determined person and pushes her to expect more from her doctors. It has also made her more fragile by taking away some of the most basic joys in life. Simple things like watching a sunrise or sitting outside on the porch and enjoying a beautiful day can trigger a migraine. She used to love trying different wines and having a glass with dinner. Today, she rarely even has a glass of red wine because it eventually became a trigger. She used to enjoy exercise like Pilates, yoga, and running every day. Waking up at a different time can trigger a migraine. Getting up earlier for work in order to exercise is even problematic because it has an effect on how much or better yet how little sleep she gets.
In sickness and in health
How does it affect your relationship with one another?
I believe she thinks it affects our relationship more than it actually does. I love my wife and meant “In sickness and in health, for better or for worse, until death do us part.” She has a hard time remembering that occasionally. All her condition really affects is that we do not go out as much. But, as I’ve told her dozens of times over the years, as long as we’re together, I don’t care where we go or what we do.
Her condition continues to make me a better person, a better partner, and a better husband. It has made me step away from the stereotypical role most husbands live. I’ve learned to pay attention to small differences in her appearance, mood, and even her appetite. I try, but don’t always succeed, at doing more around the house. When I can see that she is going to have a day where what she really needs is simply rest, I try to make that a day where, unless she wants me to sit with her, that I mess with one of my hobbies to give her both the time and the peace and quiet needed for her to rest.
Do you think it has affected the dynamic of your relationship and do you identify with the term caregiver?
Personally I do not see it as being a change to the dynamic of our relationship because part of being a husband is caring for your spouse. It is ultimately one in the same. When you get the flu, your spouse fills in where needed and helps you. It is the same type of thing; her chronic migraine is simply a part of our life.
Do you think it has affected the dynamic of their relationship with their family?
It has affected and strained relationships with her family members because none of them truly understand what she goes through each day. Sometimes, her family tries to be understanding, while other times they try and lecture her for not spending more time with them or getting involved in family events. Once, her family TRIED to stage an intervention because they thought she was taking too many medications. They did not know what prescriptions she was on and definitely did not know what she was actually taking. Her family just assumed she was taking everything she could, every day. They had no idea about her situation and never stopped to consider the fact that she has a full time job and cannot keep herself pumped full of medication. Most days she takes nothing at all and generally does wait for higher pain levels before taking her medications.
Do you think it has affected the dynamic of their relationship with their friends?
My wife only has two real close friends. One she has known for her entire life and is a person that had an incident on the job that has disabled her. Even with regular care and medication, she herself faces a life in daily pain, so their relationship, if anything, has become stronger. The other friend she has lives half way across the country and is someone whom she met through her endeavors with the startup non-profit. They have both been long time migraine sufferers who share an equal understanding of what each other go through in a given day. The two of them triumph over their condition every day by pursuing full time careers despite the debilitating pain they suffer. They are both heroes or I suppose heroines in my eyes. So her relationships are fine, there just is not as large of a number of them.
Not a burden
Is there anything you wish you could make them understand or tell them?
I wish I could make my wife see herself through my eyes and make her truly believe that no medical condition could ever make her a burden to me. I am proud of her each and every day for having the courage to get out of bed and go to work in a job she doesn’t specifically enjoy. She does this simply because she understands that, it’s what has to be done.
Do you have a message / thoughts for other others (both caregiver and migraineur)?
I know that not every relationship between the caregiver and the sufferer are the same as ours, but I wish more of them were like the one we have. This condition in many cases causes large amounts of strain on relationships and inevitably can become a deal breaker for some. Far too often, the person with migraine comes to a point mentally and emotionally, where suicide becomes an option.
My advice to a caregiver and/or a spouse is to look back and remember why it was you fell in love with them to start with anytime you start coming to a place where you feel some type of resentment or anger towards your other half due to their condition. In most cases, those things are still there but you have to be willing to acknowledge that both of you have changed over the course of your relationship. If you are able to keep in mind that their condition also has an effect on you and your moods, you stand a far better chance of finding ways to not allow the condition to alter your relationship.