The past five months have been some of the most difficult of my life. It’s been incredibly isolating to deal with ongoing health problems that don’t ever fully go away, that doctors don’t understand and frankly turn away from because they don’t have answers, that many well meaning friends and family also look over because they also don’t understand and it doesn’t fit into a mold they’re familiar with (which I don’t fault anyone for doing). It’s incredibly frustrating, discouraging, and isolating. Not to mention completely exhausting, and a burden I have had to carry practically on my own.
I’m trying to figure out what I’ve learned from it all. First thing is,
1. Everyone is going through something hard, so give EVERYONE grace. When I feel tempted to feel hurt by a friend that didn’t reach out like I think she should, or said something callous, I try to remind myself, who knows what she is going through? Meet her where she’s at. Because most people don’t know what I have been going through. I have had to put on a smiling face and muscle my way through every day for five months and some days it’s overbearing and some days I can hide behind the face. And no one knows and no one gets it. Why would I expect them to understand? Maybe that friend you feel hurt by has her own hidden struggle behind closed doors. Some struggles are private. So give everyone grace and hope they do for you too.
2. I am the expert on my body. My dad taught me this one. I am the expert. Not the doctor. Not the nurse. Not the internet. Not science. I know what I am experiencing. My body is constantly giving me feedback. Listen to it, respond to the feedback, observe. Don’t judge and don’t try to diagnose too much. Don’t expect the doctors or nurses to make you better. They do their best but sometimes it is out of their realm. And when you get enough information, come back and give the doctors the data. Bodies are complicated. No one has all the answers. And while God does, and can do all things, sometimes you just have to live in ambiguity and except that. And confront the anxiety and depression that occasionally spills over from living in the gray for so long. Then when you’ve confronted the anxiety and depression, get up and keep plugging along.
3. You are your own advocate. I went three weeks after entering the ER in excruciating pain before I got a follow up about an ultrasound. I had to call several times to even get that ultrasound. And then I had to drive five hours to get out the thing that sent me to the ER three weeks prior (and continued to cause ER level pain those three weeks waiting). Don’t expect anyone else to care about how much pain you are in unless you bother them enough. Sometimes you have to set up several appointments and cancel the ones that end up not working out. Do the work on your end to get your answers. Seek out the specialists and move on from the specialist that don’t work for you. Still trying to enact this one.
4. Priesthood blessings are real! I have gotten maybe fifteen in the past seven months. I have held on to the blessings promised in those blessings. I still hold on to those promises, despite not seeing them come to fruition yet. They provide me with an anchor to keep my hope up, and direction and guidance.
5. Try to see the tender mercies. And try to reframe the mindset of “Why is God doing this to me? Why me?” To “this is a challenge of my generation and my time and just part of my personal journey”, and “How is God supporting me through this challenge?” I had to drive to Boise to get a cyst taken out last week. A friend of ours let us stay at their house for several days while they were out of town. The hospital happened to be right across the street from their house. I was supposed to go to Florida on a trip the same weekend I got the cyst out. I could feel really disappointed I wasn’t in Florida, or I could see what a blessing it is that Samuel already got this exact time off so work wouldn’t be too disrupted by all of this. The gynecologist could fit me in within two days of our meeting, and my photography session I had scheduled for the following weekend happened to be canceled. I happened to finish breastfeeding Clara the day I went into have the surgery done, so I didn’t have to worry about how I was going to feed the baby, what medications I would have to be on or whether it would affect baby, etc. A lot of people happened to text me and offer to bring over dinner, providing four course meals. We have so much food I have had to turn people down! Samuel has a lot of projects he can work on with the girls that have been building up. I’m trying to see the silver lining in this all, and to keep my hope up and be patient. It is hard most days.
6. Go outside. No matter how I feel, spending time outside is healing to me. It grounds me. It helps me feel peace. It helps my heart heal even when my body won’t. It helps me feel of God’s love for me, even if it’s just sitting in a hammock.
7. Seasons. I’m trying to do my best to accept the season I’m in. Even when it seems extra long, don’t compare to other people’s season. I would be so stoked to be out of the season of frozen pizza and showing TV to my kids because I’m too sick, but I’m not. And when it feels too much to see everyone else doing things you can’t physically do, shut out the voices for a while.
8. Have Grace with your spouse as much as you can. When you go through a big trial (specially one that directly affects them!!) recognize that they have their own journey with this trial too. They are affected by it too and it’s their trial too, and sometimes harder when it’s because of you. Have Grace and be kind as much as you can
9. There is always good! Even on my hardest days, there are highlights. My kids still grow up when I’m sick. There is still so much to be grateful for and so much to find joy in even when I’m sick. Some days it’s hard to focus on the positive, but when you can it sure helps. And try not to mourn all that you can’t do for your kids. When mom is sick, they learn new skills too like how to help sister etc.
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