I am going to share some pretty personal information. Not a big deal to some of you, I am sure, but to me, it is huge. I am not the kind of person who does this — or at least I did not used to be. But things have changed.
In February of 2014, I spent a week in the hospital and was eventually diagnosed with gastroparesis, a disorder that slows or stops food from moving from the stomach to the small intestine.
I am guessing most people have never heard of this; I know I had not, prior to being diagnosed.
A Life-Altering Day
My life changed in ways I could not have imagined — overnight.
One day, I was able to eat at buffets, and the next day, I was unable to tolerate all foods and liquids. I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach). Eventually, I was diagnosed, but was given only a brief explanation of my illness and its treatment before I was sent home.
For the next few weeks, I was on a liquids-only diet, and was told that I had to gradually work my way up to soft foods and (eventually) solids. I am able to eat some soft foods, these days, in tiny amounts, but it is becoming clear to me that I will likely never again be able to eat “normal” foods in “normal” amounts.
Thinking About Food — Always
At first, I told myself that I would not let this stupid disease define or control me — it simply would not be the center of my life. But as time passed, I began to see how foolish this was. Every single day, every second of every day, I think about food. I see it; I smell it; I cook it and feed it to the other members of my household; but I cannot have it myself.
I look in the mirror, and I see a skeleton. I try to eat even small amounts of food, and I am in agony. I am weak and fatigued to levels I did not think were possible. Some mornings, I do not think I have enough energy to get out of bed. I can barely concentrate and function enough to do everyday tasks. And almost every single night, my husband has to help me up the stairs to bed because he is afraid that if he does not, I might fall.
My 11-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out. It has frightened her so much that she has asked my husband to get me Life Alert.
What I Miss
I grieve over the fact that I can no longer travel or get out of the house much. I grieve over missing family events and not being able to attend my daughter’s activities. I grieve over not being able to go out to eat, or on a picnic, or to a concert. I worry that I will not get to see my daughter graduate, or get married, or have children. I am not on the verge of death today (at least, I don’t think I am), but when I look in the mirror and think about how tired I am, I realize that people like this do not have long life spans — and it bothers me.
I get frustrated because people do not understand how my life is affected by all of this. If you were to see me on the street, you would likely not realize I am sick. I do not look very sick. And because most people are unaware of the effects of gastroparesis, they ask me all of the time if I am OK now. I can’t seem to convince them that I am never going to be okay again — not in the way they mean it.
I am told that I “just need to eat,” or that if I would only try yogurt, I would be OK. My own doctor accused me of being an anorexic and told my husband to “watch me.” Though I know people mean well and are trying their best to help, it still makes me frustrated.
What You Should Know
Here are a few things I wish people understood about this disorder:
1. It affects people emotionally and mentally, perhaps even more so than physically. This is a lifelong illness that patients have to cope with — always. The resulting lifestyle changes and isolation can be difficult to manage. The seriousness of this condition was not impressed upon me at the time of my release from the hospital, and I could not properly prepare for it mentally.
2. There are very few treatment options available and the few that do exist come with serious risks and side effects.
3. It often takes years to get a diagnosis, and even then, many doctors have never heard of this condition and do not know how to treat it. Specialists are few and far between.
4. Although it can be challenging, there is help available in the form of support groups, non-profits and advocacy groups. Don't face this alone.
5. The complications resulting from this disease (such as malnutrition, dehydration and infections) are often serious and can and do sometimes lead to death.
6. I wish people living with this disease knew that they had a right to speak up for themselves and should not have to apologize for being ill. Gastroparesis imposes many limitations upon us, but this is not our fault, nor is it something over which we should feel guilt. We should expect and demand that others respect our struggle, and we should forgive ourselves for perceived "failings" over which we have no control.
Still, It Could Be Worse
I am angry because I am a control freak, and I do not like being a slave to this disease. I do not like having to rely on others for help. I have screamed at, smacked and pushed my husband away for simply trying to assist me more times than I can count. I have thrown things (including food) across the room in fits of anger. I have intentionally gone without eating — even though I know I should not — just to “show” this disease who is in control. Crazy, I know! I am angry because I do everything that I am supposed to do — eat the right things, exercise and ingest the known medications — and I am still sick.
I think about the others who have this disease who are so much worse than I am. There are thousands of posts in my Facebook feed every day from people who have had to go to the ER or back in the hospital for dehydration, pain or other such conditions. I know so many people now who have feeding tubes or ports for nutrition. I know many who have developed other serious conditions because of the gastroparesis. I sometimes look at them and think that this will surely be my future, too, and it scares me. There are times when I am in such agony that I can do nothing but cry — lie on the floor and beg God to just let me die. He does not — and I am so thankful that he ignores those moments.
I mostly have a good attitude about my situation and try to make the best of it. I feel blessed that I have been given so many years with the best husband and daughter anyone could imagine. I am truly thankful for each day I get to spend with them.
Sharing The Burden
What I do understand is that it is somehow important to me to let people know what I go through — what all people with this disorder are likely to go through.
I share these personal details because I think it is important for people to better understand this disease. But I think it is equally important to share how much I have been blessed, and to let others know how much they matter and how much of a difference they can make.
I first joined a Facebook support group because I wanted to know what treatments and medications others like me had found helpful — but I hated the idea of support groups. I was there for information only; I just knew I did not need anything like support. Not for me! So foolish! You cannot imagine the blessing these online groups have been.
I have learned much, for sure, but I have received so much more than information. I have received more support, understanding and kindness than I ever could have dreamed. I have made friends that I feel I have known for a lifetime. I tell people all of the time that I hate this disease, but I dearly love all the people I have met because of it.
My neighbors have cooked meals for my husband and daughter; they have watched my child and my pets; and they have offered to transport me to and from appointments. My family has come to visit me, even though I know it is horribly inconvenient for them — and they have also stayed away when I have asked them to.
Do not ever be convinced that you can do nothing to help, that you do not matter. To those who are struggling, your efforts to understand, your cheerful words, your helpful attitude and simply your willingness to contribute and be present, make a difference.
Melissa Adams Van Houten is a wife and mother who was diagnosed with gastroparesis in 2014. She now advocates for others stricken with this life-altering illness.
A version of this story first appeared at Health Story Collaborative.