5/3/18 What sorts of things do you wish people understood about your struggles?
I want people to know that my mental health is dictated by my physical health. Beyond the standardized phrase “If you are feeling well, you’re going to be happier”, I know there is a direct cause and effect relationship between the severity of my physical symptoms and the mental health struggles that I face.
Most times it feels like my mental health goes hand in hand with how happy my colon is in that moment. When I wake up and my flare is worse, it will be because of the physical symptoms I am having ALONGSIDE the mental health symptoms. The anxiety I feel about possibly having an accident while I am out, runs in line with the physical feeling of having uncontrollable muscle spasms that may cause me to have an accident. The anxiety then perpetuates the physical symptoms. This is the vicious cycle that I feel happens all too often for me.
Granted, it is anxiety provoking to have an illness where spontaneously soiling yourself is possible, but I believe that my ulcerative colitis affects my mental health at a physiological level. If only the scientific research could back me up on this one J
Who of your medical team is responsible for your mental health care? If you feel comfortable sharing, what sorts of meds/therapy are part of your treatment plan?
I see an EMDR trained therapist because I know that I have been through some pretty difficult things in my life prior to my diagnosis and throughout it. I know that this part of my medical team is incredibly important, as it feels like many of my GI doctors have not been helpful in recommendations for how to improve mental health. Especially while in a flare. I would say the work I am doing with the therapist has helped me in such a substantial way, without this part of my healthcare team, I know I would not be where I am today in my path back towards remission. I also know that every person needs something different, and some therapists have not been helpful to me in the past. Either because they are not trained in what I need to focus on, (trauma or chronic illness), or I have not meshed well with them. In any healthcare context, the patient-provider relationship is SO important.
What sorts of things could the people in your life do to be the most supportive of you during tough days?
There are tough days and moments that are very scary with IBD. The pain has been debilitating at times and that has led me to intense periods of depression. For the people who have been the most supportive during those times, I find that their hope gets me through. When a person I trust and care about tells me that the physical pain will pass, I feel a little more at ease. When there are optimism and determination from my loved ones, I can find hope again in myself. There needs to be positivity around me when things seem bleak and the pain, fatigue, and brain fog become too heavy. I also find that talking about light-hearted topics and jokes help me a ton. When I can distract my mind from the intensity of my physical symptoms by joking with a friend or hearing about their day, it helps me immensely.
What non-medicinal things do you do that help you keep your mental health in check?
I’ve had to slow down my lifestyle drastically since the beginning of this latest flare. I have made myself become more aware of the environments that I go into that may cause me stress. I have had to avoid particular people in my life who have caused me anxiety and depression. The non-medicinal things I have done are mainly to do with awareness and self-compassion. It has been very difficult to go from being a collegiate athlete, in remission on Remicade, to being medically disabled for over a year and a half, but I have learned that mental health goes hand in hand with my physical health and they are equally important to take care of.
Anything you want to say to someone who might be struggling but not sure what to do?
Find your people. I have met some of the greatest and most beautiful people in my life by admitting to myself that I needed help, physically or emotionally. I found those who have been where I’ve been in one way or another, and just “get it”. At times, it feels like only the ignorant people who question me when I say I am feeling unwell are the only ones out there, but that’s not the truth. There are genuine people who will be there for you, and not ignore you when you say you need help. For me, it seemed like no one would be able to empathize with what it’s like to have an invisible chronic illness, but I’ve learned that’s not the case.
Your emotional well-being is very important. Especially when there are seemingly endless difficult days that you have been trudging through and it feels like relief is a foreign concept. Don’t ever give up. You are never entirely alone, even though it may feel like you are.
I have been changed through living with UC, and even though I have wanted to stop fighting for my health, when it seemed like I was the only one fighting so hard, I haven’t given up. And that’s a good thing because if I had, I wouldn’t be making such great poop jokes these days.