Both before and after a transplant there can be struggles of invisible illness.  Fatigue, shortness of breath, and edema are a few examples of challenges transplant patients may experience.  So how do we get through it all?  I’ve got five tips to help you cope.

What Is Invisible Illness?

Any illness that can’t be seen from the outside by someone else is considered an invisible illness.  Heart or liver disease, diabetes, or autoimmune disorders are all examples of invisible illnesses.

For example, transplant patients can experience many things both before and after a transplant.  These might include fatigue, headaches, difficulty breathing, joint pain, hepatic encephalopathy, or edema.

Keep Your Expectations in Check

Before my transplant, I was often fatigued and would be out of breath after walking 25 or 30 feet.  As a result, my doctor completed a form for me to get a temporary hang tag for using handicapped parking.  This also meant that I could not walk around the grocery store so I’d need to use a motorized cart for shopping.

As a 41-year-old woman who (aside from having a skin color close to that of an Oompa Loompa) I looked fine.  My mom and I would use the handicapped tag, and on good days I’d walk in and proceed to the motorized carts.

Sometimes, you may run across a well-intentioned (usually) citizen.  They might feel it is their duty to ensure help for the disabled is not misused.  In some more rare instances, someone may be more aggressive in their objections.

Expecting people to look at you with empathy could leave you feeling disappointed.  Every day people are more and more inclined to share their opinions openly and even aggressively.  If you have your expectations in check, you won’t be taken by surprise if someone says something or glares at you.

You can always ignore them.  Or try saying, “I have an illness that requires the use of handicapped parking (or motorized cart or whatever).  Thank you for understanding.” does the trick.  There may be a time where you need to get someone else involved, but most of the time you can move on.

On that same note, be sure you are not making any snap judgments of anyone yourself.  People in glass houses and all of that.

Seek Out Support

Family and Friends

Your support people know all too well what you are going through.  They know you are sick and tired of being sick and tired and they want to support you.  Each person in your personal support group offers something different for you.  Look to those people when you need a little extra cheering or need to vent a little.  Remember that they see what you are going through and it can be difficult for them too.  And be sure to thank them for listening.

My mom was my ear for almost anything that was going on with me.  I understand that my situation is unique and not everyone has someone they can go to any time they need a listening ear.  I also know that there is only so much one person can do for me, which is why I also had a therapist.

Help From a Professional

You may need someone who can offer a little bit more than a listening ear.  If you haven’t figured it out, I am a big fan of therapy.  Speaking to a therapist can help you to see a different perspective. It also keeps you from wearing out the welcome of a listening ear from one of your loved ones.

Support Groups

Sometimes just knowing you’re not alone is all you need to get through it.  If anyone can understand what you are going through, it’s someone who is or has gone through it themselves.  Support groups can be very useful in finding people who can relate to you.  The only caution I have with this is that sometimes people see support groups as an opportunity to compare who has the worst situation.  Be careful to not get sucked down a negative spin of, “woe is me.”  That will only cause you to dwell on the difficult.  This leads me to my next tip.

Find the Silver Lining

If you’re waiting for a transplant, life is not all rainbows and unicorns.  Finding the silver lining or happy thoughts may not always be the most simple thing.  However, it can be easy to skip over all the good things in life because we are wrapped up in all the negative things we deal with day in and day out.

Take some time each day to literally count your blessings.  Write down things that made you happy or accomplishments you made.  Hey, when you’re having trouble moving at all, a trip down the street to the mailbox is quite a feat!  If you try, you may find you can locate some positives in just about anything.

Don’t Beat Yourself Up

There’s very little control you have over what you are going through.  You are doing the best you can.  Accept that you are going through this battle. Sometimes you need to acknowledge your experiences and that you have an invisible illness.  From there, you have what you need to do to squash some of the guilt you may be feeling about all the things you can’t do.

And for crying out loud, be kind to yourself.  You wouldn’t treat someone poorly for having a chronic illness, so why on earth would you do that to yourself?

Take Care of Yourself

Give yourself the latitude to rest when you need to rest.  Find things you enjoy doing.  Is working on puzzles your thing?  Set up a table with a puzzle you can work on during downtime or download a puzzle app on your phone.  Do you get a kick out of knitting?  Have a project you can work on when you’re stressed or take to appointments.

Pre-transplant we are spending our time fighting for our lives.  It’s important we also remember to try to do things we enjoy too!

After a transplant, many people feel as though things should just return to “normal.”  Getting back to normal (or at least the normal we knew before) is seldom what happens. Life is different.  We are no longer battling liver disease (or another disease for that matter).  But now we are now medication-taking, blood-draw-getting, clinic-visit-going people.

It’s crucial that our self-care continues physically.  But we also need to find the things that bring us joy under these new circumstances.

Invisible is Invisible

Keep in mind that an invisible illness is, well, invisible.  People are going to be insensitive from time to time, even if their heart is in the right place.  You may hear people say a number of things.

“You just need more rest.”

“You don’t look sick.”  That one is one of my favorites.

“Have you tried XYZ supplement?”

“I know exactly what you’re going through.”

“I thought you had a transplant to fix that.”

“Aren’t you ever going to be normal?”

Remember that, in most cases, people are unaware of what you are going through. They have not idea that it is possible to be dealing with something and look “fine.”  If you have the energy, you can take the time to educate them on what an invisible illness is and what they can do to help.  Lesson one: don’t tell me I’m imagining things or that I should just “get over it.”

If it’s any consolation, I understand what you are going through.  You and I are different, but we share some similar life experiences and I can relate.  At least to some degree.

Hang tough, and know you are not alone.