I am not a medical professional. I am only sharing my experiences. Please seek medical advice before making any dietary or lifestyle changes.
I've wanted to do this post for awhile but there is so much to talk about, so I finally decided to do it in two parts... which hopefully part two will be out soon.
Before I dive in, when I say "unspoken topics", I don't necessarily mean they have never been talked about before on this planet. I simply mean that in the forums, social media pages and especially by medical professionals, the topics below are simply not talked about enough.
1. Depression and anger: Probably the most "talked about" on this list, but not from medical professionals. Most of what I have found are people on forums and social media speaking out. Gastroparesis is no joke. It's awesome if your symptoms don't present themselves often or if you've been in remission for years, but for most people they aren't as lucky.
Having an invisible illness is frustrating. No one in your family knows how you feel, or your friends. Your boss can't understand why you call out of work and your partner doesn't fully get why you can't move out of bed some days and this wears down on you fast. Not only do you have pressure from others judging you, but you tend to put pressure on and judge yourself; "why is my body 'betraying' me? Why am I the sick one? I just want to do normal things but I can't, my partner will break up with me because I don't do anything around the house" etc., etc.
No one prepares you for this. Doctors tell you to eat small meals and see a nutritionist and the nutritionist tells you to eat things that you can't and gets irritated when you tell them you don't dare try anything new. People praise you for losing weight but don't understand that you feel disgusting in your own body and are too physically and emotionally fatigue to fight them on their comments. I get it. I am grateful to have family and a partner that are more supportive than most, but I still felt guilt all the time (and still do sometimes), for not being able to do things that I "should" be able to.
There is light at the end of the tunnel, you just have to find your routine. For me I jumped into doing anything I could to get better, like actually trying. So many people "try" and then give up or indulge in certain food they probably shouldn't, or get in too much of a "funk" and have a hard time getting out of it. My advice to that is to seek help. Whether professionally or in your relationships. Have someone there to hold you accountable, to keep your positive and to motivate you to become as healthy as you can.
2. Forgetting what certain food tastes and smells like: This one may seem odd to some that don't have dietary troubles, especially to the extent that GP causes (let alone anything else). Personally, I haven't had a single tomato product in an incredibly long time. I think I have only had one microscopic bite of pizza with sauce in the past 2 1/2 years and as someone who used to eat an entire raw tomato, the thought of it now baffles my mind. I can hardly remember the taste of tomato in my mouth, or seeds, nuts and raw vegetables. Having mush for so long it feels like my mouth would rip apart if I had anything super hard or crunchy again. Maybe it's only me? But this is a topic that never gets any attention. It goes in hand with the previous one because it can definitely make you upset. You don't realize how social and important food is in your life until you have troubles. I felt upset that I couldn't eat the foods I once was able to, that previous favorite foods feel completely foreign now and I'm not sure if/when I'll be able to eat them again. With this, for the past 6 months I have felt the healthiest I have ever been and that keeps me going.
3. Doctors dismissal: This is one where I think many people aren't fully aware of. Many aren't aware when their doctor dismisses them or they're too afraid to speak up because after all, they have the medical degree and know best... right? Wrong. No one knows your body better than you. If you don't feel your best and your doctor says "oh your blood work/tests/everything looks fine" or "oh it's because you're stressed", then speak up or get a new provider. No one should be settling for feeling "ok" try striving towards feeling great.
Unfortunately it's really common for doctors to dismiss your symptoms. Gastroparesis specifically is not something that your regular primary care doctor (or even GI doctor for that matter) know much about. It's frustrating but if they haven't either heard of it before or studied it in school, then you're pretty much out of luck. This is where I dove into my own research in order to help myself... (see a previous blog post on how to help yourself through GP).
4. Relationship impacts: A couple years ago I joined a Facebook support group that was pretty awful... but one posting I do remember was a girl upset because her boyfriend just broke up with her due to having GP. Awful, yes, but I'm sure this happens a lot more than many expect.
My boyfriend did all of the chores around our apartment for well over a year. Does it make me feel guilty? Of course, but I had to use every ounce of my energy to go to work and school each day, which I was still highly struggling with. Luckily he's been a gem and I have had a lot more energy the past year or so, but for a long time he had to do a lot more than he should have for us both.
There were plenty of times when we were both stressed with school and work, and I'd feel like complete crap but he would have to do the dishes and the laundry despite him having a deadline that night. Did I feel guilty? Of course I did. Were there arguments? Yes. Are we okay now? We are. Even if you don't have a partner, whether it's with friends or family, your relationships can definitely be impacted. Family not understanding why you don't want to go to an event or a social gathering or why you can't eat certain foods, making comments at you, etc., is incredibly discouraging and aggravating. The best thing you can do is focus on yourself and your own health. That is literally all that matters.
5. The fear of trying foods again: This is definitely a tall hurdle. It felt like years before I finally got enough courage to reintroduce foods. I have spoke to so many on my Instagram page about this topic. When I started I would only try a new food on a Friday evening, that way I had the weekend to potentially suffer before the work week. Honestly looking back I can't think of a time where I actually suffered all weekend because of it, but it made me feel better to do it then. This is pretty much the extent of my advice with this subject other than to take it slow... like slow slow, and to reintroduce foods that still are within the GP diet.
That is all for part one, I am hoping part two will be out soon where I dive into I think to be even better "unspoken" topics. If you have any questions or comments please let me know! Or if you have any blog post ideas you'd like me to talk about :)
Stay healthy,
Loreal
Comments