First, I want to thank you for your readership of Part 1! Being a writer is not easy. Actually it's one of the toughest jobs I've ever had! Especially writing about personal subjects like the challenges I have faced with my health. Publishing and sharing my last article on social media caused me to feel vulnerability so intense my cheeks turned red! Fortunately the risk became worth it when my story (read Part 1 here) resonated with so many. It is always my intent to help others through my writing.
Attempting to put my thoughts, feelings and innermost experiences into words for the first time is challenging -- memories tucked away so deeply do not effortlessly float to the surface. I have done my best to continue to let them emerge without judgement or filter and flow into the words I write.
Since I first started writing this series, a multitude of feelings have come up including deep sadness. Even waking up a few weeks ago to start crying as I reflected on my life and some of the unpleasant ways I have been feeling physically. Who knew writing could be so cathartic?! Wow!
Living with multiple chronic health conditions has been an extremely difficult existence in many ways. At times it is quite painful. Whether I am conscious of it or not, I do not always let myself feel these painful emotions for better or worse. Yet maybe this is a somewhat successful coping mechanism to get by each day with such an exorbitant load?
That is why when grief came up recently after I learned about the cancer risk for those of us with diabetes and other ways I have increased risk, I let myself cry and be sad and upset. Within a short amount of time I felt better and came to a healthy conclusion about the way I felt and how I could take this information and positively move forward. Then out of nowhere I began processing grief for a diagnosis I received ten years ago that at the time I just soldiered through, much unaffected. I feel better about this now too by honoring my feelings as they came up and not pushing them away.
For Part 2 of this series I have created a list sharing some of the ways my invisible conditions impact me on a deeper level in my life and relationships. I tried my best to remember what I could, but am sure I am forgetting some things too. Please note I am not a negative person (at least on good days...). I just deal with a lot more than the general population and more than many health care providers can wrap their minds around. The invisible conditions I live with have changed who I am and how I interact with the world. I am much more intense and tenacious. This is what I have had to do to survive and have any sense of joy and peace in this life where my health challenges me on some level every day.
As you read this list you will learn my health can be severe and restrictive at times. I keep fighting. It can be hard at times to believe I could ever feel better but I have an expert holistic care team working with me to try to unravel this onion with many, many layers. And I am healing on some levels and with certain conditions. I have learned healing becomes all the more painful and difficult the deeper layers you reach but I am not giving up hope and faith that things will improve. I will share more about this next week!
You will now be learning things about me that only a few close people in my life and healthcare providers know about... (holding breath).
On What Living with Invisible Conditions is Like...
1. I have been called selfish for trying take care of myself the best way I know how. When you are juggling multiple conditions in addition to Type 1 diabetes, Type 1 becomes MUCH harder to manage and control and requires much more diligence. Diabetes and the other conditions feed off each other. If my diabetes gets out of control, the other conditions and injuries flare up and become worse. And if I do not exert extreme care for my other conditions, they flare up negatively affecting my diabetes. Any sort of control of blood sugars or feeling well goes out the window. It is a downward spiral and quick. And of course with poor control we are also at risk for diabetes complications both near and long-term. Diabetes is not something you can put on the back burner if you want to have any quality of life now or in the days going forward. It truly is like a lion you cannot turn your back on.
2. I have had people become quite upset at me for running even a little late. Not understanding: 1) I have done everything in my power to arrive as close to the time we set -- sometimes it takes a few more steps to ensure I feel my best for our time together 2) I am doing the best job I can without wanting to cancel plans altogether. I suppose I should explain when this happens why I am arriving late -- what is going on with my health that pushed back my arrival. It's just too hard sometimes to bring up my health one more time... Sometimes I don't want to focus on it or have them only see me as my health when they think about me. And if I'm really struggling, their lack of reaction when I share openly about my hardships is devastating to my heart and spirit. Therefore I protect myself by not opening up.
Please give us the benefit of the doubt. Remember that the way we are feeling is not always obvious by how we look on the outside. Many of us have been dealing with these health challenges a long time -- this makes us excellent at pulling up our boot straps and putting on a cheery smile... disguising the pain we feel inside. When we are feeling poorly, one of the only things that might give it away (at least for me) is showing up ten minutes (+/-) late. We adore you and care about you. Otherwise we never would have scheduled with you in the first place. Please do not think our tardiness is due to a lack of interest or care about you. You are most likely one of the people that makes things easier and more bright for us in this life riddled with pain, frustration, stress and disappointment. We need you even if we cannot always be there for you in all the ways you need us to be.
3. I have been made to feel bad when my health got in the way (even while volunteering for a diabetes organization). You can imagine how tricky things get when you throw an infection or flu, or the trauma of a car accident on top of an already heavy chronic health load. Being made to feel guilty or excessive for needing rest so as not to end up in the hospital during a serious infection doesn't sit well with me.
Aren't the people who work or possibly volunteer at these organizations supposed to be the ones who understand us (our unique health situation with diabetes) on some level? That our diabetes makes things MUCH more serious and life-threatening if critical steps are not taken to ensure restoration of health when ill or unwell? We don't heal as quickly as someone without chronic health conditions and possibly not even as quickly as someone solely with Type 1. Yet we know our own bodies better than most will ever have to and need to be trusted when we are not well enough to honor our volunteer commitment. Also most of us want to take no chance at getting someone else sick knowing how ill we get and difficult to control our diabetes becomes when we get sick. I can understand from their perspective counting on that volunteer for a scheduled assignment or task. But I truly think they should be more sensitive to individuals in the populations they serve volunteering their time and energy to benefit their organization and find a cure.
4. I have been questioned about my daily walks, cycling or yoga by people who just do not understand why they cannot be skipped. Sometimes it's by a fellow Type 1 who does not need to exert this same level of energy or motivation to control their diabetes. The level of health I currently maintain is directly correlated to the care I put into my health. Skipping my exercise is NOT an option for me that keeps me well now or in the future. I also deal with insulin resistance. Without exercise my diabetes does not cooperate or respond well to insulin meaning lots of high blood sugars. As I mentioned earlier, my health quickly spirals out of control when I am not able to give my body the gentle care it needs, which for me means some kind of movement every day.
5. I am compared to people they know that are much older with severe health problems. The ways I have struggled with serious chronic health conditions as a child and a person in their teens, twenties and thirties is FAR different than someone who has had excellent health and led a full life up until a diagnosis in their 50's, 60's, 70's or beyond. Do not compare me to them. Being a young person with compromised health alongside peers who have endless energy and health is something very upsetting I've had to work through over the years -- the comparisons only magnified during times I have experienced exceptional struggle.
The emotional, mental, physical and financial resources they have in abundance are what is compromised in me because of my health and all of the ways it continually challenges me to my core. It's hard not to feel sorrow when they are on their second trip overseas and I am just trying to pay for my prescriptions at the pharmacy or a massage to help deal with the stress. Chronic health conditions are never easy no matter what age you might have them, just don't compare me to your Grannie!
6. At times I feel very isolated. Sadly much of my time, focus and energy is devoted to my holistic journey to health -- keeping track of my chronic health conditions, self-care and trying to heal my injuries. Often I am not able to make plans until the day of to make sure I have enough energy. If I push myself at all during the times my body is demanding I need rest, it could push me into days, weeks or months of exhaustion and not being able to do much. Even the yoga practice I love so much and is so healing for me. As a result I am not as active socially as I once was as I don't know how I'm going to feel once that day comes. Hating to cancel on others, sometimes it's just easier not to schedule outings, time with family or friends or volunteer activities. I really dislike letting down others because of my health.
7. Not being as relatable to others who deal with one of the conditions I do. Every aspect of my health requires great discipline, action and follow-through to prevent my health from spiraling out of control. I sometimes fear this makes me not as relatable to others who are able to be more lax about the condition(s) they live with. The intensity for which I care for myself has increased with each passing year, and unfortunately the development of more conditions. It took over 20 years to get to a point where I love myself enough to put my health first each day. The way others may feel about me will never change this. Although I am blessed to have found an awesome community through my personal blog, I wish my love of healthy cooking and baking, holistic therapies, yoga and being mindful were able to appreciated more by others. I may need to accept that my interests and needs will always be on the outskirts of the diabetes and/or other communities.
8. Having few people who really get me on many levels. With some of my friends my health never comes up yet it is constantly on my mind as I try to manage it. Diabetes is 24/7! It feels good to talk about other things while we are together but at the same time feels odd when such an enormous part of my life is completely ignored. It's like a big white elephant in the room that no one pays attention to. You might not be thinking about my health, but I am! And it's what has taken up a large chunk of my time since last time we met.
Fortunately there is one person who has become a great friend to me that understands so much of me. She also lives with Type 1 and a handful of other conditions. When we get together we might talk about our diabetes for a few minutes if one of us has a high or low blood sugar. But then diabetes may not come up again the entire time. Unless one of us checks our blood sugar or takes a shot, etc. This is how we like it! Maybe both of us being diagnosed as children with Type 1 has something to do with it or that we both live with other conditions and have many other interests and passions. Although some of the additional health conditions we have are the same, others are different. We are not only able to easily understand the good and bad days and highs and lows we each experience, we can relate to the constant weight and responsibility of chronic health on our shoulders. We connect in some way every day. And laugh, have fun, love food and enjoy deep conversations too. I'm so thankful for her.
9. Having different abilities than others with Type 1. Balancing multiple conditions I am not able to accomplish all the things people living solely with Type 1 are like running marathons, completing triathlons, cycling 100 miles or climbing mountains, etc. It's not because I let my diabetes hold me back. There is SO much more to the picture as I shared in part one.
These kind of endurance activities would wear me right out. Every ounce of energy I wake up with must be carefully preserved and spent on what is only most critical. Quite often what I really want to do has to wait and be put on hold. And each day has to be scheduled in accordance with every other day that week. Too many things scheduled in too short a time or one day that becomes too tightly scheduled can leave me exhausted and with high blood sugars for days.
Gentle exercise like walks, yoga and cycling while listening to what my body needs suit me best. They give my body the movement it needs while not depleting the energy I need to look after my health.
10. Having a shifted perspective. Living with a lot more than Type 1 diabetes, I don't always quite feel like I fit in with Type 1 or other health condition groups on Facebook or in person. Some make a big deal out of their condition and think living with a diagnosis of diabetes (or another autoimmune condition) is too much to overcome. Their tone can be very dark and deflated. Their sense of hopelessness and frustration is unfortunate but I understand as I live with the same condition they do. I also have upsetting days that just feel so hopeless. The difference is when you wish and fondly remember the days when that one condition was the only one you lived with.
Living with more than one serious condition gives you perspective on life, relationships and so many things you would not have otherwise. Although I know many of us would probably do without this insight and understanding in favor of a life free of health conditions or to even live with just one again. I know I would!
My perspective has shifted to one where I think about actual diabetes far less often (after 27 years of this, there are a LOT more interesting things to think and talk about!). And the other conditions I live with often have a much more drastic impact on me, in some ways far more than diabetes.
I want more for my life than to crumble behind a single diagnosis. Even one as challenging as diabetes which often leads to damned if you do/damned if you don't scenarios. I'll be the first to admit, diabetes is terribly challenging and quite awful in many ways. But I'm not going to let it break me. Although it adds an inordinate amount of physical, mental and emotional strain to my load with all of it's incessant qualities.
11. Being blamed for my health and the limitations it sometimes causes. I wish people could have more empathy and understanding. And be thankful that I am making the most of what it is I deal with -- I think with strength, courage, patience and a lot of bravery. Could they change their mindset to possibly feel thankful I take my health so seriously which gives me the quality of life I do have vs. looking on me with negative judgment for something I didn't cause? It would not be my natural choice to have a million appointments each week. To not be able to drink alcohol or eat any gluten, dairy, corn, nuts, etc,. That it is a requirement I get to bed at a decent hour and possibly might still need to rest and keep my schedule light during the day and skip activities I was hoping to attend just because I am not up for it. That I have to exercise each day without fail. I know I am busy but I am doing the best job I can to be healthy. And I am doing all I can to be positive, roll with the punches and enjoy life.
12. Weird things making me happy. One last thing. Do not judge. I might already be a little
I will be back next week with Part 3 which will include what I do to rise above and work through the challenges of living with multiple serious chronic health conditions. And if you made it through the end of this (I think this is the longest article I have ever published!), thanks for reading! I hope you enjoyed it.
What are some ways your health challenges you in your life or relationships?
In Peace & Wellness,
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