Coping | IBD | Information
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!
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 is 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.
Who of your medical team is responsible for your mental health care? If you feel comfortable sharing, what sorts of medications/therapy are part of your treatment plan?
I see an EMDR (eye movement desensitization and reprocessing) trained therapist because I know that I have been through some pretty difficult things in my life prior to my diagnosis, and throughout it. This technique is often used for the treatment of PTSD. 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 health care 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 that we just haven’t meshed well. In any healthcare context, the patient-provider relationship is SO important.
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 related to awareness and self-compassion. It has been very difficult to go from being a collegiate athlete, in remission on Remicade, to being medical disabled for over a year and a half. I have learned that mental health goes hand in hand with my physical health and they are equally important to take care of.
What do 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’ve 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.
Any last thoughts you’d like to share?
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.
Kristen Hutchinson describes herself as “a bad ass UC patient”. She connected with the GWG community at the 2017 Celebration in Chicago. Kristen has had colitis for about ten years, including the two years of misdiagnoses at the beginning of her journey. Through many ups and downs, different medications, and side effects from medications, she has seen many friendships/relationships/family bonds built and broken down. She’s still struggling with a host of other medical issues that have stemmed from her most recent flare that has now lasted over two years; however, she just finished a round of fecal transplants in a clinical trial, which saved her colon! Today, Kristen is hopeful for the future and especially optimistic about the new treatment concepts that are coming forward and all the research that is being done. She wouldn’t wish this illness upon my worst enemy, but says it has made her who she is today.
What an inspiration.