(Below the video, I attached the written blog.)
Having an invisible illness has impacted my life drastically. Thankfully, God has sent blessings along to help make the journey survivable.
Seeing me, you most likely do not realize that I am fighting invisible illnesses daily, mostly of which relate to a broken malfunctioning digestive system. The main 2 culprits are Gastroparesis and Colonic Inertia, which basically means my stomach and colon (large intestine) do not function. I am unable to eat normally, because food would just sit and rot in my stomach creating nausea, pain, bloating, and sometimes vomiting. Therefore, I have to depend on my GJ feeding tube for nutrition. I have a pump, that when connected pumps liquid formula directly to my small intestine, bypassing my stomach. This worked well for about a year and then I began having issues with tolerating the formula. As a result, I completed a Sitz Marker study which showed that my large intestine (colon) is not functioning. This very well could be the reason that I have been having problems with receiving my formula feeds. Currently, I’m successfully able to handle and function on about ½ can of formula a day at a rate of 30ml per hour. On “good” days I can supplement with a little bit of liquid or popsicles orally. That means that my TOTAL caloric intake is between 100 - 500 calories per day. As you can imagine, lack of energy and dehydration can be an additional burden on my already fatigued and often painful, nauseated body. Just consider the last time you had the flu or food poisoning and were unable to eat for a day or two. Now imagine living that way for years! That’s what many of my friends living with Gastroparesis and I have been enduring day after day.
For those that knew me before I became sick (Feb 2013), I may “look” healthier today because I have lost quite a bit of weight. In the past 2 ½ years I have lost approx 170-180 pounds, and am still losing. But this is not a positive thing. I know people mean well when they try to compliment me by saying that they can notice how much weight I’ve lost and that I look good. But what they don’t “see”, what they don’t understand or realize, is the “invisible” torture my spirit and body has been through. I may “look” healthier, yet the weight loss is a side effect of me not being able to eat and some days even drink. My last true meal was Feb 17, 2013. I was actually healthier, more active, and living a pretty awesome life when I was obese. I was traveling, practicing ball outside with my kids, teaching, etc. Now, I stay fatigued, nauseaous, and in pain which leads to an almost non-existent non-active life at times. Living with a chronic illness, in my case an invisible illness, can cause you to feel isolated. There have been many days when I feel like I am just here, alive but not living. Days when I feel like I am just witnessing and watching life pass me by. Days when I’m upset or feel guilty because I have to cancel or miss out on special occasions, events, or activities. There have been times when I literally feared that I would not make it, feared that my life was ending, feared the heartbreak that my children & other family members might have to face. There have also been times that I have been terrified about my friends that were struggling or on the verge of death, or in some cases contemplating suicide because they could not find a doctor to understand them or be able to help them.
What amazes me, is that there are so many living life like this as a result of Gastroparesis and/or Colonic Inertia. More than 5 million. Yet these illnesses are not known by the general public and even more surprisingly they are under recognized and misunderstood by so many medical providers. It isn’t uncommon to have doctors or nurses that are cold to us, turn their back, or even dismiss our pain. I hear about it everyday in our online support groups. Luckily, for the most part (yes I’ve had a few bad experiences) but for the most part the medical providers I’ve depended on have been empathetic and concerned. Unfortunately, though, they don’t always have the answers and sometimes don’t know about the conditions or how to treat them to help me feel better. One of the most discouraging things to hear from a medical provider is “I don’t know how to help you, we are running out of options, or as much as I want to help you - I don’t think there is anything else I can do.” I know how awful this feels, as I am hearing it more and more often. Thankfully, my GI team hasn’t given up on me, yet.
Some of you may suggests that our GP Community reach out to the media for help. Guess what? We have, and we have been turned away or ignored because they think our stories are “too gross” or “uninteresting” to their audience. I have many friends that I’ve met online that are literally STARVING TO DEATH from Gastroparesis. The disease may be invisible, but we are NOT. We WILL continue fighting to be heard. We will band together and continue to help and support each other. Individually we may be sick, weak, and frail but together we stand strong and mighty.
All this being said, I want to make it clear that having an illness, whether it’s invisible like mine or not, will have some silver linings. You just have to open your eyes and heart to recognize the blessings that surround you. God doesn’t give us more than we can handle, it’s true, even though at times we may feel pushed to the absolute max. God is ALWAYS with us. God is amazing! In our storms, HE provides us with umbrellas, rainbows, and support if we just TRUST him. It’s so easy to focus on the negative, but that is not want God wants from us. He wants us to hand our worries, fears, and pain over to him. He wants to hold us, carry us, and comfort us. He wants us to love and assist each other, without judgement.
I’ve met some of the strongest, most beautiful, and kindhearted friends from all around the world in the online support and advocacy groups that I participate in. I have learned so much about myself during this difficult health journey. I would like to share a few things I’ve learned, that may help you on your journey as well.
- Life events and memories are no longer taken for granted. I VALUE my tie with family so much.
- Holding on to Faith, Hope, Love, and Trust is a must!
- When you hand over your troubles to God, you are able to have peace and joy your heart because you know, without a doubt, that better days are ahead.
- Advocating has been a life changer for me. Spreading cheer, offering emotional support, and sharing knowledge are not only rewarding but provide my life with a renewed purpose. I have always loved making a difference and helping others and advocacy has helped me continue to live a purpose-driven life.
- I’m empowered. I’ve learned how to stand up and demand great health care based on my personal medical needs. I am no longer “just” a patient that listens and follows instructions. I research, ask questions, and communicate my concerns and needs with my medical providers. To be on my medical team, drs must be willing to work WITH me as teammates. Yes, there are some amazing compassionate drs and nurses out there. Trust me, I’ve met a few of them.
- Writing, rather it’s poetry or just blogging, is very therapeutic and helpful in spreading awareness to others. But most importantly, it helps me learn more about myself.
- Everyone has their own battles in life. Some are invisible and related to health, like mine. For some people, their battles may be related to finances, relationships, emotional problems, visible illnesses, or other disabilities. We don’t understand what another person is experiencing, we don’t understand their cause of despair, or their struggles just by looking at their outward appearance. As a society, we should take a moment to consider how we can help one another instead of quickly judging someone from based on assumptions or looks alone.
I’m going to leave you now with 3 words that have become very important to me and should be remembered by all.
Believe that God’s in control, you are NEVER alone, and that better days are ahead.
Have the courage to step out of your comfort zone to help yourself and others.
Find the strength that you have inside of you. It’s there, GOD ensures you have all the strength you need if you trust HIM. Strength can also be gained from your support team, which for me includes my exceptional family and friends.
Thank you for watching my video.