What I Wish People Knew About Budd Chiari Syndrome

If on any given day our paths crossed, what would you see? I would like to hope you would see a mom in the grocery store, teaching her kids to make healthy choices and how to pick out the best produce. If you saw me at the park, you would see a mom who was doing her best to keep up with her kids. At the zoo, I’m just the crazy lady with the camera who takes a million photos.

But what people don’t see is that I’m also the mom who spent the week menu planning around foods she was unable to eat. Or the mom who was stuck in bed for days after a few hours at the park or zoo with her kids. You wouldn’t see the illness that I have been living with and likely have no idea that I had Budd Chiari Syndrome or even what it is. It’s invisible to others, but not to me.

The Invisible Illness

That’s the thing about invisible illnesses. If you aren’t the one living with it, you might not even know it was there. It’s estimated that 1 in every 10 people have an invisible illness. How many people do you know that are living with an illness? If only I had a dollar for every time someone said “I had no idea you were sick!” I’d be able to pay all my medical bills in full!

It’s frustrating at times because people can’t see it, so they forget about it. Out of sight out, out of mind. I’ve gotten really good at smiling through it all and I often say I should wear a shirt that explained it all. I just wish people really understood what life is like with Budd Chiari Syndrome. I’m sure anyone with an invisible illness can agree. So what do I wish people knew?

Every Day is Different

I wish people could understand that my today and tomorrow are two very different days. There are going to be days that I look and feel like I can take on the world. I might go on a great hike or hang out with my friends. I might spend the day cleaning and cooking amazing meals. Only to barely be able to get out of bed the next morning. Just because today was good, doesn’t mean tomorrow will be too.

I wish people understood that tired doesn’t mean the same thing to me and you. There is no amount of sleep or rest that is going to fix my lack of energy. It won’t hurt, but I’m not just tired.  I have insomnia and day/night sleep reversal. My organs are struggling and my body is fighting to keep up. I’m exhausted. Mentally, physically and spiritually. Some days I sleep in, some days I don’t sleep at all. I’m so much more than tired, but some people just don’t understand that.

I May Have to Reschedule Plans

If you know someone living with a chronic illness, whether that be a friend or family member, try not to guilt them or get upset when things don’t go as planned. Part of living with a chronic illness is that things change day to day and sometimes, our health gets in the way. We have to learn to adapt and just go with the flow. We always feel guilty when things don’t go as planned or it affects another person’s day, especially when it comes to canceling or rescheduling plans. Just try to be understanding and patient.

I feel guilty that I can’t do more for or with people because I didn’t feel well enough. I had to cancel on a friend’s Halloween party once. It was an hour away and would have been a late night. I just wasn’t up for it. I never heard from her again and it broke my heart. I carried that guilt with me for years.

I Can Still Do Fun Things

Most people hear the words chronic illness or Budd Chiari Syndrome and assume that means I’m limited in my life. Yes, I do have some limitations, but I can still do fun things! A few summers ago we took two big summer trips and if I had any idea people were going to be so opinionated, well, I would have gone anyway. But why can’t I go on a vacation? The answer is — I can!

Even though it was really hard and took me weeks to recover, nothing can replace the fact that I got to take my boys to Disney World and see my baby brother get married. Just because I’m living with a chronic illness, doesn’t mean I can’t live my life to the fullest and enjoy it like everyone else! While things may be a little more difficult, don’t put limitations on those with chronic illnesses.

Being Stuck at Home Isn’t “Nice”

Because I have a chronic illness, I have to spend more time at home. Unfortunately, this means I do get some comments from people telling me they think I’m “lucky” for staying home. While I understand they likely don’t mean ill will, what I hear when they say that, is that I’m “lucky” I have a chronic illness. Trust me, this is not the case. I didn’t want to stay home and now I don’t have a choice. We had planned for me to be home when the boys were little but not for this long. I am thankful we have been able to make it work but I would give anything to be able to contribute more.

To help ease the burden my husband has to shoulder. So please don’t tell me, or anyone with a chronic illness that keeps them home that they are blessed.

Chronic Illness is Scary

I wish people understood just how scary this is. People ask me that and then are shocked when I say yes. The only cure for Budd Chiari Syndrome is a complete liver transplant and because there are not enough registered organ donors, I may never get one. Right now I’m not “sick enough” to be higher on the transplant list. I’m just waiting to get sicker and trying to somehow stay healthy enough to survive a surgery that will take between 6 and 12 hours. It’s scary!

More Awareness

What I wouldn’t wish, is life with this illness on anyone. I just wish some people could better understand what it is like to live with this illness. And that’s one of the reasons I decided to start my blog. To help people understand me that much better. Maybe they would think twice about making a snarky comment or complaining about something that I would give anything to have.

Next time you find out someone you know or love is living with a chronic Illness, try to remember that it’s so much more than just having an illness to them. This is their life. Just because you can’t see it doesn’t mean it isn’t there.

Kimberly Munoz

Kimberly Munoz

Kim is a 37-year-old wife and mother of two boys. She was born and raised in the South Pacific and is now living in Texas. In 2008 she was diagnosed with Budd Chiari Syndrome, a rare liver disease. When she couldn’t find anyone else living with the same condition, she started her blog Hope Whispers to share her journey and give hope to others living with chronic illness.