Coping | IBD | Information
Did you struggle with mental health at all before your diagnosis?
Yes. I am a survivor of childhood trauma, and although I have never been medically diagnosed (by personal choice), I identify with having PTSD, anxiety and depression.
How did diagnosis with a lifelong condition and the early stages of your illness affect your mental health?
I was diagnosed with Crohn’s one year ago last month (April 2017). There was a lot going on during those early days when I was adjusting to implementing a strenuous new volunteer job into my life, as well as coming to the realization that something was wrong with me healthwise. I had always had what I would categorize as a “sensitive stomach”, but this was different. I experienced severe and increasing symptoms for two months before I went into my general practitioner. After lots of tests, labs, and being poked and prodded, I was finally diagnosed and from there was able to be treated, which was a relief. However, one thing that will always stand out to me from when I first went in was the fact that I was told my stomach issues might be due to anxiety and that I should try medication for it. I understand that doctors don’t have any answers until they see test results and labs, and in the beginning stages they really have to suggest all avenues, but the assumption that my physical symptoms were a manifestation of a mental disorder was highly offensive. I felt this especially as a woman of color, where it is commonplace that our physical ailments are not taken seriously by the professional medical world. Only you live in your body and you are the best judge of when you have something seriously wrong with you or not. I knew after dealing with a lifetime of mental health issues and treating them accordingly that my physical symptoms were absolutely not 100% tied to my mental health.
Once I was diagnosed, the thought of having a life-changing, incurable autoimmune disease was sobering. Even though I am extremely lucky so far with only mild to moderate symptoms, the flare-up that I was in right when I was diagnosed was extremely difficult, especially as a person who had been quite healthy for the majority of my life. What was happening to my body? What does this mean for my long-term health? What does this mean for my financial status? How will this affect my (unhealthy) relationship with food? All of these questions weighed very heavily on me in the beginning. I always look at mental health as kind of a roller coaster – there are many days when I really do feel like a normal human being, but there are also days when I feel so incredibly hopeless that it seems pointless to go on. But part of healing also includes accepting the fact that with steps forward, there will be many steps back, and that is ok and all part of the process.
What parts of IBD put the most strain on you emotionally?
The fact that this disease is so unpredictable and can really affect your daily life puts the most strain on me emotionally. The exhaustion and dehydration mixed with the physical pain can really be a tipping point in where I’m at emotionally. For example, receiving an unexpected medical bill on a normal day would be an annoyance and something I would have to deal with. But receiving that unexpected medical bill on a day when I’m having trouble with basic functions will put me into a tailspin. I am lucky that I have been able to manage the disease fairly successfully up to this point, but I will also say that dealing with the doctors, pharmacies, billing and insurance companies is an added stress that seems really unnecessary. I understand we do not live in a perfect world, and I have actually come across my fair share of professionals that are quite helpful, but I’ve also had my fair share of extremely unhelpful people.
Do you find it difficult to explain to people on the outside that IBD affects your mental health, as well? Do you think they’re surprised to learn this?
I think in general, all aspects of IBD are very difficult to explain to people on the outside. I believe this is true of all autoimmune diseases in that physical pain, sometimes completely inexplicable pain, dominoes into mental anguish, dominoes into anxiety, dominoes into depression. The affects of IBD are so multilayered that I think it is difficult for people to wrap their heads around, especially since in a lot of cases, IBD is an invisible disease. It is so much easier for people on the outside to empathize with visual physical ailments.
What sorts of things do you wish people understood about your struggles?
IBD is an autoimmune disease and every person with IBD experiences it differently. One person’s answer is not necessarily another person’s solution. IBD is so much more than a stomachache from some bad food you might have eaten. Also, not a ton is known in the medical world about the disease and funding for research of autoimmune diseases is lacking.
When you’re having a tough day, what does that feel like? Look like to other people? Can they always tell?
When I’m having a tough day, I almost feel like I am outside of my body. It affects every aspect of everyday life that we normally take for granted. I try my best to keep it under wraps and deal with it on my own, because it’s very hard for me to ask for help. My goal is that I hope people can’t tell I’m having a tough day because I do not want to be a burden to others. Something I have to continuously work on is not feeling like I am an inconvenience to everyone in my life. I feel guilty for calling out sick from work. I feel guilty for calling my sister out of the blue and just cry-screaming to her about all my frustrations. I feel guilty for needing help. The only thing that stopped me from taking an Uber to my colonoscopy was the fact that my doctor’s office refused to do the procedure without physically seeing my ride accompanying me. Trust me, the thought crossed my mind to pay the Uber driver to pretend to be my companion for the day, HAHA!
What sorts of things could the people in your life do to be the most supportive of you during tough days?
The most important thing for people to remember when offering support to someone in need is that it is not about you. We are not looking for all of the answers. We are not looking for you to feel what we are feeling. All we are asking is for you to lend an ear, listen, and validate how we are feeling. We want to be seen and heard. A good article that I read recently was about conversational narcissism: The Mistake I Made With My Grieving Friend. It’s a trap we all fall into, but if you’re self aware enough, you can re-frame your way of offering support.
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 sought a new therapist after I was diagnosed who I saw for a few months, but unfortunately at this time, my insurance plan and financial situation does not allow me to regularly see anyone for mental health. Tailoring your mental health to you and you alone is very important. When I was searching for a new therapist, I ensured that not only were they in-network under my insurance plan ,but that they had background in the things I wanted to deal with. This included trauma and being newly diagnosed with a chronic illness. I found PsychologyToday.com to be a helpful tool in my search. I then reached out to a handful of therapists via e-mail to see if we might be a good fit and then moved forward with actual appointments from there. My main focus was talk therapy and using principles found in cognitive behavioral therapy (CBT) to obtain a new viewpoint on where my life was heading with the new diagnosis. I personally choose not to take any prescribed medications for my mental health, but I understand that countless others have found solace in implementing them into their healing. People should not be afraid to ask about medications and learn more about them.
What non-medicinal things do you do that help you keep your mental health in check?
Self care is an idea that is thrown around a lot in regards to mental health, but it really is very important and it looks different for everyone! I like to take full advantage of the days I’m feeling well. That doesn’t mean I’m out skydiving or anything like that, but I do not take the healthy days for granted. I always keep in the back of my mind the days when the abdominal pains were so bad that I couldn’t stand up or when I could not get out of bed. I try to get as much sleep as possible, drink a lot of water, and keep to a fairly set schedule. This helps me keep control of my life versus it spinning out of control. I also check my privilege quite consistently. I haven’t had to have any surgeries yet, am fairly successfully managing my disease (aside from a few small bumps in the road), am able-bodied, have health insurance, and have my own transportation to get myself to doctor’s appointments. Knowing any or all of these aspects can change for the worse at any moment really keeps me in check.
What do want to say to someone who might be struggling but not sure what to do?
I’m a pretty independent person but still have had to come to terms with the fact that you are your own best advocate. Ask questions, do the research, ask more questions, push back, be brave, educate yourself, and ask more and more questions! Seek out your people. I have participated in local support groups, leaned on a group of people at my volunteer job, and found forums like Girls With Guts to help me get through how isolating this disease can be. Connecting with people on a higher level, above superficial, has really helped me through everything. What I especially love about Girls With Guts is that we are free to ask each other literally anything about our disease, regardless of how potentially embarrassing or personal it might be. There is a group of supportive people going through the exact same thing as you and offering lovely advice and encouraging words. Although I am a fierce advocate of inclusiveness and equality, belonging to a female-identified only medical support group gives me a certain sense of safety.
Any last thoughts you’d like to share?
I am not naive to the fact that some of this may sound preachy or too optimistic to some people. I’m also not naive to the fact that the rug could be pulled out from under me at any time, and in those dark times, it can be the hardest to stay optimistic. However, I have had that darkness before, and with life experience comes more tools I can use to get myself out of those dark spaces in a more efficient way.
Felicia Gagliardi was diagnosed with Crohn’s in 2017 and found the Girls with Guts community through a recommendation from a fellow support group member. Felicia works in finance by day. In her free time, she volunteers as an advocate at a rape crisis center located in Minneapolis. She is a Prince super fan and loves to read and indulge in mindless reality TV.