Do People Know What We Go Through?
Recently I was texting a friend who was also dealing with a family member with health issues. We were comparing notes. Both of our loved ones had ports, and currently they were both dealing with low hemoglobin. In the context of our text conversation, she remarked, “Good lord, I don’t think anyone actually knows what you guys go through. “
People in the IBD community often feel invisible, as though their disease and experiences are not known. They, we, don’t feel seen. Some people prefer to keep things more to themselves, and that’s okay. Others share often, either publicly on social media, blogs, etc or more privately, with friends or family. There is a range of differences in how and what people choose to share. But even if we share our stories, talk to others, write about it, call a friend when we are going through something, it is hard for others to know all the things that a person with chronic illness and their families have gone through. It is hard to know what day-to-day life is like. This is just a fact and not a judgment. Truthfully, it is not necessary for others to know exactly what we experience as caregivers, or as patients. What is important is that people just know that in fact, we are going through it. Whether the illness is visible on the outside or not, we are going through something at any given time. I have spoken to many people in our IBD community and what we need is simply for people to be aware that the chronic illness we are affected by is ever present.
March of 2022 marked the 20-year anniversary of Lowell’s Crohn’s Disease diagnosis. Basically it has been his whole lifetime as his infancy was marked by receiving this diagnosis, and then figuring out how to navigate it. I feel as though we have been through every stressful scenario one could imagine. I know this is not true, but it sure has felt that way. I think I assumed that anything else that we were confronted with, any new complication, would be challenging but that we would dig deep and summon all our coping skills to face whatever it was head on. For the most part, that has been the case. For example, the pre-Thanksgiving trip infection was a bummer and disappointing and sad and upsetting, but we went through it and managed the best we could. My son has had several port/picc/central line infections, and this was just another recurrence. Yes, it was another disappointment as we were about to embark on a trip to NY, our first since the pandemic started. The trip was delayed a few days but somehow, we made it there and were able to enjoy a few days of what, in my opinion, is the best time to be in New York City. There is nothing like it around Thanksgiving and I am a Macy’s Thanksgiving Day Parade fanatic. Since my family is over it and now flat out refuses to even go, I was lucky because a family I know from LA was in NY and my little 7-year-old friend who has IBD was there and I was able to spend time with her and her family.
Post that Thanksgiving timed infection, his hemoglobin started dropping. People with IBD are often low on iron and can have periods where they need iron infusions or even a blood transfusions. There are so many reasons for this and here is a quick review of anemia in IBD patients.
Many in our community have had periods of low iron and anemia and it is important to find the cause. As Lowell’s situation persisted, and iron infusions were not doing much to increase his hemoglobin, he ended up needing blood transfusions more often than we would have liked. It was kind of like a game of cat and mouse, chase the low hemoglobin with blood transfusions while doing every test to try to figure out the cause of the low count. Is it his iron stores? No, those seemed to be ok but perhaps some vitamin deficiencies and malabsorption were making it difficult for his body to use the stores he has. At first the doctors had theories and ideas but as the numbers did not improve more tests were required. Form the GI perspective was there a slow leak somewhere? From the hematologist view, was there some generic cause or worse?
All the while this is happening, once again as a patient and caregiver trying to figure it out, we had to forge our own plan for the most part. It has been about 5 months and things are still barely improved. His home care nurse comes weekly to change the central line dressing and do labs so we track the iron levels. With the blood transfusions the hemoglobin jumps up one or two points only to go back down again a week or so later. To get a blood transfusion you need to do type and screen blood test every time in order to monitor antibodies. There were days when it seemed based on his symptoms that the hemoglobin was low and then we would call the hematologists office and hope they could fit him in that day. Otherwise, the only other option was to go to the Emergency Room, an exhausting and all day affair. It was my idea to have a weekly appointment set up at the hematologist office so we could get the transfusions there if needed, avoiding the ER, which is sure to be an unpleasant experience
At some point I just couldn’t help but think why is it that I’m devising a plan for us to cope with this problem? Why is our health care system still so difficult for patients to navigate? I’m not blaming our providers because I love our team of expert specialists and we have good access to them. But no one ever said “hey let’s set up an easy way for you test weekly and monitor need to for transfusion.” It was not easy to schedule the transfusion if we thought he was low or even if we knew he needed it from the labs the nurse had drawn at home. Sometimes no one would pick up the phone or return our messages at the doctors’ office. Huh? It was exhausting until I insisted on the standing weekly appointment.
Many many times over the years I have wondered how other families know what their child needs and how to get it? Some people have more resources available while others face difficult obstacles whether it be socioeconomic, language barriers, or just not having time to make these calls, and figure out who even to contact. Everything is incredibly time consuming, and people have demanding jobs, other kids, and may not always know how to advocate for their child.
I have been surprised by the daily anxiety of this situation and have tried to figure out why of all the things that have happened and that we have dealt with managing my son’s IBD, that this has caused me so much anxiety. The last few months have showed me that there is still more upheaval and unexpected consequences that can amplify the stress. I think that perhaps we had been through so much that my attitude toward anything else was like, “Bring it on-we got this.” But that was not the case as I have had more anxiety during these months. I think it is because we still don’t know the exact reason for it, thus it is more difficult to find a solution. Thankfully, we have ruled out scary things and in there have been a few times when the hemoglobin number was slightly up and stable, but we are not out of the woods. Having consistently low hemoglobin is not great for your overall health, and this is another thing that can sometimes keep me up at night.
Many in the IBD community and the larger chronic illness community are aware of these things: We never know what the next challenge thrown our way will be.
We advocate for ourselves, or our family members
We want you to know that we are here, we are fighting
We hope you understand that at times, our lives can be consumed by disease.
We don’t always want to talk about it or explain.
Like many people, it is important to keep in mind that we are all fighting battles. Hold space for others, for us, for yourself.
