Living with a chronic illness is hard. Like life-altering, crash-course-in-perseverance, dig-deep-to-find-the-will-to-live kind of hard sometimes. Caring for someone with a chronic illness is also hard. I’ve had my fair share of encounters with people who make me feel really alone and misunderstood but I am incredibly blessed to have a family that has proven to be a champion support system. Chronic illnesses can be tricky for support people because, unlike the nature of acute illness, there is no “get well soon”. By definition, a chronic condition isn’t going to go away. Its the new “normal” everyday life and when the traditional flowers, cards, and casseroles aren’t appropriate, it can be a struggle to figure out what exactly is the best way to show you care. With that being said, I wanted to acknowledge the absolute best ways my family has shown me love and kindness through this journey.
1. They believe me when I talk about symptoms.
This one is by far the most important to myself and many other people battling an invisible illness. When I complained of a headache that lasted for weeks, I wasn’t told I was weak or exaggerating. When I say I’m in pain, I’m not treated like a drama queen or a wimp. When symptoms began cropping up in every body system possible, I was taken seriously and not treated like an attention seeker even as my list of specialists grew longer and longer. This is so incredibly helpful because in the medical community, invisible illnesses are often brushed off and the patient is pigeon-holed as a drug or attention seeker or as a hypochondriac. Knowing that your family is standing behind you, ready to fight with you and advocate for you means the world.
2. They respect my limits.
Before I got sick I could keep up with the rest of my family with no issue when we vacationed in Disney World and spent 12 hours a day at theme parks for several days in a row. If I wanted to go for a jog, I just put on my shoes and ran out the door. I could hold my own in a modern dance class (at least when it comes to stamina. I am a terrible dancer). Now however, there are days when just walking to the back door to let my dog outside leaves me winded and dizzy. Other days I am able to do more depending on how I’m feeling but it always varies from day to day. When I need to lay down or just can’t handle going for a walk, my people don’t push me to do it anyway. This takes so much stress out of social events because I know that when I say I need to leave or take a break, I won’t have to worry about upsetting those I am with and adding more guilt than I already feel.
3. They still invite me on outings.
Going along with respecting my limits, my family members haven’t stopped inviting me on adventures. There are a lot of times I have to turn down the invitation but that choice is left up to me. Because my symptoms can vary so much day to day, I really am the best person to decide if something is a possibility for me. This means that when I log onto social media and see pictures of my people having fun, I can enjoy seeing them living life without the nagging hurt of feeling excluded or forgetten. I know that they would love to have me along but they also understand when that isn’t an option.
4. They help me with things I can no longer do for myself.
I live in a house with no one to take on the chores I’m physically unable to do anymore. For the past two years, I haven’t had to worry about my lawn growing out of control because my grandpa comes by regularly and mows for me. My dad planted flowers alongside my house when I was too weak and tired to do it myself and my mom and grandma have done the same in the past. In my worst times, my mom has cleaned my kitchen and my cat’s litter box for me. All of these acts of kindness were done without me asking and without any strings attached. It makes being home so much less frustrating when I don’t have chores piling up that I can’t tackle.
5. They keep talking to me about their lives.
My medical life makes up the majority of what I have to contribute to conversation. For me though, its just my life. Its not a sad story or something that is more important than the issues healthy-bodied people face. I’m not an “inspiration” or made out of anything magical that gives me the strength to make it through extraordinary circumstances. I’m just a regular person who currently happens to be dealing with health stuff. We often view health struggles as something that “puts life in perspective” and reminds you to not complain about life. But I love to hear about whats happening in my people’s lives, positive or negative! I am still me and I still care about what others have to say. It makes me feel like I can still be a real human with real human relationships when I can have conversations with people in the same way I did before Lyme took over.
6. They respect the choices I make regarding treatments and doctors.
One thing there is no shortage of these days is unsolicited medical advice. It seems like there is always a new miracle program being sold and those with chronic illnesses are often the targets of these marketing strategies. There are so many buzzwords in the media regarding healthcare and specific medications like antibiotics and opioids and everyone has an opinion. My family members are very good at showing they care by taking the time to read articles about treatments and discussing things with me, but ultimately respecting that my treatment plan is a personal decision discussed and decided on by my doctor and myself. They know that I spend countless hours doing my own research, that I know what I have tried already, what success rates are of different protocols, what is most likely to help me, and that I know my body best.
7. They send me thoughtful things.
A sure way to make a rough day brighter is to be on the receiving end of a caring gesture. This can range from a simple text to check in with me, to my aunt introducing me to a new artistic outlet through painting supplies, to getting a “happy box” in the mail. In college, when things got tough, I would sometimes get a package at my door from my mom filled with things to make me smile. She would send me tasty treats, encouraging notes, usually a unicorn of some sort, and whatever else she thought might make me feel a little better. During a hospital admission my cousin once spent an afternoon sending me photos of “daily odd compliments” to entertain me. Being reminded that there is a cheering squad behind you when you’re going through hard times can make such a huge impact. Being reminded I’m loved and cared for keeps my hope alive and my attitude positive.
Taking the time to be grateful for the blessings you’re given in life is important and not a day goes by that I am not thankful for my close-knit family. I don’t know how I would make it through life without them! If you have someone in your life going through a difficult season, I hope this list can be helpful in understanding how to best support them.