The Difficulties of Getting Help When You Actually Need It
It is such a catch-22 when you aren’t feeling well and need to see your physician. I can’t tell you the number of times I have just been feeling awful and really needing my doctor to help me figure out what was going on, but I just couldn’t drive there myself or stomach the hour plus drive it takes for me to get to the closest IBD center near me.
Dealing with an invisible illness
I know there are some doctors who Skype (none that I go to, though.) I guess it really depends on what the situation is. Since Crohn’s disease and ulcerative colitis are invisible illnesses, there is very little a doctor can see from just an office visit. Having said that, there are things such as anal fissures, fistulas, abscesses and other extra intestinal manifestations that a doctor would be able to see just from being in close proximity to his/her patient.
Avoiding a doctor's appointment
I had been putting off seeing a doctor for my skin issues with my ostomy for a while because I was just too uncomfortable to go there (physically and emotionally.) I also put off seeing my gastrointerologist just this morning because I wasn’t feeling well enough to make the two hour drive given my appointment was at the heart of rush hour. It stinks because I really needed to see my doctor.
I know this isn’t a problem that is anyone’s fault...it just kind of is what it is.
I also find that I am less apt to call my doctor’s office if I am not feeling well. I know it doesn’t make much sense, but in some ways, I just don’t want to deal with more. And doctors, to me, are “dealing” with things - even though I know they are only there to help me.
Relying on others for help
In addition, I hate feeling like I have to be so reliant on other people to drive me, help me make appointments when it is too emotionally difficult, advocate for me if I can’t do it myself, etc. The dependency that often goes alongside having a chronic illness like Crohn’s disease and ulcerative colitis is so difficult to handle. Then guilt sets in, but that is an entirely different topic since it is one of the things that impacts me, and I know others with IBD, an inordinate amount.
Plus, it may sound silly, but you have to still be “on” when you go to the doctor. You may not need to wear make up, be in incredibly fashionable clothes, but you at least have to look presentable. And if you have been able to do nothing but lay around, barely able to shower or do basic things like that, it can be really difficult.
Explaining symptoms to the doctor
When you aren’t feeling well, it can be hard to convey all of your symptoms so your doctor can adequately assess what is going on. I know for me, when I am not doing well, I kind of just say things as I remember it as opposed to coherently giving my doctor the best information possible so he/she can actually figure out what is going on. I know being such an overwhelmed patient can be really difficult for physicians and their staff.
Making an appointment is also hard because it is often for sometime in the future (as opposed to that day) and you never know how you are going to feel that day. Obviously, this is the only way scheduling can work, but it doesn’t negate how challenging it often is to get help when you actually need it.
I just wanted to share some of my thoughts on this because I know I can’t be the only one running into these “problems.” I always want people to know they aren’t alone since it can be difficult for the people in our lives who aren’t walking in our shoes to truly understand so many of the little things, pass judgment, and make you feel lousy. Unintentional, of course, but I know sometimes it is just nice to hear (or see/read) what you have been feeling for a while. It always helped me feel validated that others were having similar thoughts related to life as an inflammatory bowel disease patient.
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