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EDUCATION: Lyme Disease, The Invisible Illness

Lyme Disease is one of the fastest-growing diseases in the world and has reached pandemic levels.

But when Christina Womble was diagnosed with chronic Lyme disease at the age of 20 after being sick for over 12 years, she was faced with pushback from doctors, her insurance and people close to her.

Join Christina Womble and Scott Santarella, CEO of Global Lyme Alliance, for a look at the stigma behind an ‘invisible illness’ that packs a devastating punch.

Date: May 31, 2018
Time: 7pm
Location:  TNP Library, 123 Mason Street, Greenwich, CT
Registration: Seating is limited; Registration is required.

How to Show Someone With an Invisible Illness That You “See” Them

by Kerry J. Heckman

Invisible illnesses like Lyme disease are not always detected by your outward appearance. Here are 7 ways that you can show someone with an invisible illness that you “see” them.

Last summer Global Lyme Alliance sponsored an event in Chicago called the Sublyme Soiree. I invited my brother and sister-in-law to come with me. During the event, a doctor spoke about the impact of Lyme disease on his patients. I was so grateful that my family had made the effort to come to the event and that they were able to learn about the impact of Lyme from someone other than me. It was the first time in a long time I truly felt seen.

Invisible illnesses are not easily detected by our outward appearance. Because our illnesses are invisible we often feel invisible to the outside world. We are often mistaken for being “all better” or “not very sick at all.” In addition, many people with invisible illnesses, like chronic Lyme disease and autoimmune disorders to name just a few, experience flare-ups followed by periods of relief, which leads to further misunderstanding. If you have a loved one who has an invisible illness here are some ways you can show them that you care.

Never underestimate the power of snail mail

You know the feeling when you open up your mailbox and among the bills and junk mail, there is a card with your handwritten name on it? It always brightens your day. It’s nice knowing someone took the time to pick out a card or postcard at the store, write in it, buy a stamp and send it in the mail. Sending a card, postcard, or care package to someone who is chronically ill shows you care. Who knows? Maybe your card will arrive when the person is having a bad day and your compassion will make them feel less isolated.

Find a way to have fun on their terms

If you invite someone who’s chronically ill to an amusement park they are likely going to say no. If you invite them to tea, a short walk by a lake, or to a movie, they are more likely to say yes. It depends on their stamina. Some days are better than others. Try to think of an outing that doesn’t require a lot of energy. If the person is homebound, maybe you can binge stream a television show with them while sharing a pint of ice cream.

Remember chronic illness is inconsistent. On a good day people with chronic illness are able to do more but on a bad day, they may not be able to leave the house. The problem is we don’t know when we will have a bad day. It makes it difficult to plan, so try to be understanding if the person needs to change or cancel plans.

Never question a symptom or diagnosis

People with chronic illnesses are constantly being questioned by those in the medical field and also by people close to them. Frequently, we are questioned about our fatigue and pain—two things that can’t be seen and that change from day to day.

If you want to show a person with chronic illness that you care about them, take them at their word. If they say they are tired, they are tired. If they say they are in pain, they are in pain.

Ask about triggers  

Each person with chronic illness has different triggers. Personally, I’m triggered when people joke about my diet choices or comment about antibiotics being bad for me. The reason these are triggers for me is because I don’t want to be on a restricted diet or take antibiotics, but both make me feel better, so I do what I have to do.

For a person with chronic illness, each treatment decision comes with careful consideration and a great deal of anxiety. Once that treatment decision has been made, an outsider adding their two cents only causes more anxiety on behalf of the patient. If you are seriously concerned about a person’s treatment decision there is a way to discuss it without judgment.

Learn something about their illness

There is a wealth of information online about every illness. Take a few minutes and read up on what your loved one is going through from a reputable source. If your friend or family member posts a link with information, click on it and gain some new knowledge.

Recently, my dad alerted me to a new documentary on ME/CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome). I didn’t know he knew that was one of my symptoms. It meant a lot that all those times I was talking about my fatigue, he was listening and wanted to learn more about it.

Attend an awareness event or donate to the cause

If a loved one asks you for a donation or to attend an event for a cause, do what you can to make it happen. We all know how difficult it is to ask for money or time from someone, and when it is related to a friend or loved one’s personal health challenge it can make them feel even more vulnerable. This, of course, is not always possible. There may be financial and time restrictions that are insurmountable. It is not an expectation, but know that it will mean a great deal to the person.

Don’t treat them like they are a different person

When someone is diagnosed with a chronic illness they may change their behavior, but remember they are still the same person. Try not to avoid them or treat them with kid gloves. We may feel different in many ways, so we count on those close to us help us remember who we are.

At the end of the day, one of the most effective things you can do is ask yourself, “If I were sick, what would I want someone else to do for me?” Your friend or family member won’t expect you to do everything on this list. They will be pleasantly surprised if you do one or two of these things.

 


kerry heckmanOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

How to Be a Good Partner to Someone with Chronic Illness

by Kerry Heckman
#MyLymeLife

How do I know how to be a good partner to someone with chronic illness? Because I have one. But that wasn’t always the case.

 

I was diagnosed with my first autoimmune disease shortly after my husband, Zach, and I got married. We’ve been married almost ten years, and I’ve been more or less sick the entire time. There was a time when Zach had very little patience with me and my ever changing symptoms.

Before I was diagnosed with Lyme disease, anxiety was one of my worst symptoms. I literally thought I was going to die. I would wake Zach up in the middle of the night, looking for reassurance for unexplained chest pain or a mole that looked different. I would jump to the worst case scenario in every situation, then perseverate on it for hours. After awhile he started walking out of the room, because he didn’t want to listen to it anymore. It felt like he wasn’t there for me.

Then, there was the year when I was really sick. I stopped being able to help out around the house and all the responsibilities feel on him. I couldn’t cook or clean, the laundry piled up in the basement. He wanted to go to concerts or out to a bar like we used to, but I was just too tired. By any definition, I was not a good spouse or partner and occasionally he would remind me of it.

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Yet something shifted after he came with me to my first appointment with my Lyme specialist. He developed patience with me. He started to listen more, and sit with me while we talked through my symptoms. Slowly we became partners in fighting Lyme.

Every day I hear heartbreaking stories of how chronic illness tears apart relationships and ends marriages. When you can’t see an illness, it’s very easy to think someone is faking it or taking advantage of the situation. Sometimes the healthy partner thinks “I did not sign up for this,” and takes off. Sometimes I think the partner leaves because he or she is not strong enough to watch a loved one suffer.

Some advice for partners:

Be there.

I’ve been known to break into spontaneous crying fits. I can only imagine it’s how annoying and frustrating that is for my husband. At first he tries to walk away and then I see the thought process going on in his mind as he slowly turns around sits down next to me. My crying fits only last a couple of minutes, then I take a few deep breaths and gather myself.

Just sitting with someone while they are breaking down is one of the most powerful things you can do, and you don’t even have to say a word.

Listen and ask questions.

Talking things out is how people process thoughts and emotions. Lyme has been described as a do-it-yourself disease. There is no standard treatment, so we have to make decisions about our treatment protocol, our diet, and our exercise regimen without much guidance. There are a lot of other things to process with chronic illness. We sometimes wonder why this is happening to us or if we’ll ever get better. Sometimes we don’t have “a point” or are not particularly good at making sense, but it helps just to talk.

When your partner asks you to read something, read it.

One of the symptoms of chronic Lyme is brain fog and we often have difficulty finding the words to express how we feel. Sometimes I find an article or blog post that I really relate to and I ask my husband to read it, so that he can understand me better. It’s a simple gesture, but it will bring you closer together. Do what you can to learn about the illness. You can even look for articles on your own, and bring them up to your partner.

Go to appointments when you can.

Like I said earlier, something changed after my husband started going to my appointments with me. I think a doctor validating my symptoms made it real for him. He knew I wasn’t making it up when the doctor said everything I was experiencing was a symptom of Lyme.

Embrace diet and lifestyle changes.

One of the most helpful things my husband has done was go on an elimination diet with me. He was having some health issues, but probably didn’t need to completely change what he was eating. It made it so much easier to do it together and we kept each other accountable.

There have been many times during this journey I have felt like a burden. Our money is spent on treatments rather than nights out, I have a strict bedtime of ten o’clock. I do not have the stamina to go to parties. But we still make an effort to make things fun, like cooking together, watching comedies to laugh together, and choosing low key events we both can enjoy.

Stand up for your partner to others.

My husband lives with me every day, while my friends see me only occasionally. He knows the truth about my illness, which I often hide from others. It makes me feel so supported when he speaks up about my illness to my friends and family. I get sick of defending myself and it’s nice that he is willing to take over.

Allow your partner space to heal.

This year my husband gave me the greatest gift he could ever have given me. He suggested I leave my job and take a part-time job. It’s allowed me the space to start the healing process.

Maybe allowing your partner to quit his or her job isn’t possible in your situation. Think about what else you can do to allow your partner space to heal. Can you put the kids to bed while he or she takes a bath? Can you help sort and pay the flood of medical bills? Can you give up a corner of your office for a meditation space? Any little bit helps.

Believe your partner, all the time, every time.

People with invisible illnesses, often feel just that, invisible. When we tell our coworkers we are in pain, but we don’t look like we’re in pain, we’re afraid they don’t believe us. A partner can be the one person with whom we don’t have to worry about being ourselves. Don’t second guess, don’t minimize, just believe.

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On the other hand, I have some advice on how someone with a chronic illness can be a good partner. Don’t expect perfection. Know that this is a hard road that no one asked for, including your partner. Express gratitude, even for the tiniest things that make your life easier.

Pass this article along to your partner. It may help to open a dialogue. However, be careful not to imply your partner isn’t doing a good job, which can easily make a person defensive. Pursue a dialogue on how you can be better partners to each other. As the patient, I have empathy for the caregiver. There is no recognition and no attention paid to your struggle. Doctors rarely ask the partner how they are feeling.

Lyme is a third wheel in our relationship. It’s something for which each person has to take some responsibility. Every day Zach is learning how to be a better husband to someone with a chronic illness. Sometimes I’m amazed at the information he has picked up about Lyme disease or my autoimmune conditions. He went from never wanting to talk about it, to bringing it up when he sees an article online.

All relationships take hard work, and when you add in Lyme it makes it ten times more difficult. While you are fighting the illness, the pain, and the fatigue, remember to also fight for each other.

Read Kerry’s previous blog, “Grieving the Loss of a Career to Chronic Illness“.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

The High Cost of Telling Someone ‘You Don’t Look Sick’

by Kerry J. Heckman
#MyLymeLife

I remember the first time someone told me, “You don’t look sick.” I was sitting in urgent care and the doctor told me I had a rare infection in my spine after seven months of being passed from doctor to doctor with no diagnosis.

 

“No wonder they missed this. You don’t look sick, you’re so calm and composed.”

Little did she know the internal turmoil that had been going on in my head. I thought I was slowly dying, and that I would die before anyone could figure out what was wrong with me. One of my legs had blown up like a balloon, my inflammatory markers kept crawling higher and higher, and the pain had gotten so bad I felt like I was being stabbed in my side. But I guess I didn’t look sick.

On the final episode of The Oprah Winfrey Show in 2011, Oprah famously said, “I’ve talked to nearly 30,000 people on this show and all 30,000 had one thing in common—they all wanted validation. They want to know do you hear me? Do you see me? Does what I say mean anything to you?”

Lyme disease is the ultimate “invisible illness,” a name given to diseases you can’t see. Not only do many of us look normal, but our illness is not recognized by conventional medicine. We are told our symptoms are “all in our head,” or that we are “faking it.” The CDC and IDSA say our illness doesn’t even exist, referring only to Post-Treatment Lyme Disease Syndrome, as opposed to chronic Lyme disease, which according to the CDC website “almost always gets better with time.”

Funding for Lyme disease prevention, research and treatment is minimal. Compare the $25 million in Federal funding for Lyme disease to the $42 million in spending for West Nile virus. West Nile is a terrible illness. However, when you compare its 662 total cases in the United States to the more than 300,000 people who contract Lyme disease in the U.S. every year, it’s clear that our health and safety doesn’t seem to be much of a priority.

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The second time I was told I didn’t look sick was ten months later. The cause of the infection continued to elude the top doctors in Illinois, and I was left with no viable treatment options. For a while, I’d been seeing a therapist, who specialized in health issues, to help me cope with the crippling anxiety of being undiagnosed. After working with an integrative medicine doctor and doing research on my own, I suspected Lyme disease. I explained my suspicions to my therapist and she said, “People with Lyme disease are really sick.” I wondered what impression I’d been giving her. I knew I felt really sick; apparently I still didn’t look it.

It turns out it was Lyme disease and multiple co-infections. Once I had a name for it, I thought everything would be different. I thought doctors would finally take me seriously, no matter what I looked like. Then, I started learning more and more about the controversy behind chronic Lyme disease diagnosis and treatment. I knew what I had, but no one in the medical community would give me any validation.

The third time I was told I didn’t look sick was more recent. I was back in the hospital awaiting a third biopsy on my spine, and a young resident told me, “You are the healthiest person we’ve seen all day.” I felt like she was looking right through me.

I didn’t go to medical school, so I don’t know how doctors are taught to analyze physical appearance, but I know enough people with chronic health conditions to know you can’t always see the chaos that is happening inside the body. At a time when chronic and invisible illnesses are being diagnosed at epidemic rates, we might want to stop looking at outside appearance to determine how sick someone is or how much help they may need. It seems like a dangerous way to assess and diagnose, which may lead to missing something or minimizing a serious issue.

The misconceptions aren’t limited to the doctor’s office. At times, family and friends disregard Lyme patients, because they can’t see our pain or fatigue. It’s human nature to judge a person’s health based on appearance. If you look fine, you must be fine, right? We are expected to work, do chores, be social, and help out just like anyone else. Things you would never ask of someone in a full body cast or with a gaping wound. For that reason, we have to constantly come up with excuses as to why we can’t do something, and feel the need to justify what we have is real.

Like Oprah said, we all want validation.

What is the cost of telling someone, “You don’t look sick”? It’s not what you say, it’s what the person hears. Every time someone said those words to me, I heard, “I don’t hear you, I don’t see you, and what you say doesn’t mean anything to me.” And that is what truly makes people feel invisible.

#MyLymeLife


Opinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.