The Reality of Living with an Invisible Illness:
This letter is dedicated to those who believe people who live with an invisible illness are lazy, faking, lying and any other negative thoughts you may have because on the outside they ‘don’t look sick’.
This letter is not written from a mean-spirited, angry, negative or bitter place; rather I am writing this letter to help spread awareness about what living with an invisible illness looks like. While you can never truly understand the day-to-day struggles of a person with an invisible illness (I truly hope you never ever ever experience this yourself), it is my hope that this letter will help to open your eyes to what other people are going through.
This letter is generalized to include anyone with an invisible illness. There are more invisible illnesses than I can write but some include arthritis, SCI, failed surgeries, depression, anxiety, fibromyalgia, PTSD, auto-immune diseases, lupus, polycystic ovary syndrome and so-so many more ( sorry if yours was not listed, list is endless)!
All of these invisible illnesses take an incredible toll on a person physically, mentally, and emotionally.
Those who live with chronic pain are impacted of course with physical pain but also feel mentally exhausted and often emotionally defeated.
Those with a mental health condition/disorder are both emotionally and mentally impacted but they also feel physical pain thanks to feelings of exhaustion, stomach aches, difficulty eating, chronic pains, muscle stiffness, nerve damage, headaches, and many-many other symptoms.
Here is an example of what a person who is newly diagnosed with an invisible illness goes through:
Let’s use an imaginary person named Lexie as an example. Lexie is a single mother of 4 children who works as a manager at a retail store. Although money is tight at times, she is generally a very happy person and a awesome mother to her children.
One day things start to change…Lexie feels completely exhausted, she was tired when she went to bed but was awake most of the night in pain, nightmares, etc. She brushes it off thinking it’s just an ‘off’ day. However, this continues for weeks and is getting progressively worse. Even on nights when she does sleep she still feels completely exhausted the next day. She is also having increasing pain in her hands, back, legs and shoulders ;making it difficult to do her job. it She pushes through, perseveres, smiles, and puts on a brave face for those around her. After all, she doesn’t ‘look sick’. This continues for months, she starts forgetting simple tasks and feels like she is living in a fog. She’s embarrassed and frustrated with her body. She has seen her doctor over the course of the past 10 months but blood tests and scans all come back saying she is fine.
You’ve probably seen a girl or guy before who is going through exactly what Lexie has been dealing with.
Remember, the young girl in her late 20’s park in a handicapped spot at the store last week? You saw she had a sticker but figured it couldn’t be for her… it must be for one of her parents or grandparents because she’s young and ‘doesn’t look sick’. The reality is that the parking sticker was in fact hers. She is mortified that she has to use it. After all, ‘she doesn’t look sick’. But if she wants to be able to get food for her kid’s lunches the next day she has to park there. After all, it took her 45 minutes just to get dressed to go to the store. The fact that she can’t park and walk in like everyone else her age makes her feel frustrated and embarrassed. But the pain is excruciating. She wouldn’t wish this on anyone.
Lexie feels defeated.
Her kids are still taken care of but they have definitely noticed her saddened demeanor and mom no longer has the energy to play with them at the park, or any other location. Lexie feels crazy, she knows something is wrong but she looks fine. She feels like no one believes what she is going through. She also hasn’t told many people about what she is going through out of fear that they won’t believe her and think she is whining, weak, and “looks fine”.
This letter will not address dating, marriage, and relationships; that’s an entirely different letter, explanation, and understanding.
Remember the times your coworker has called in sick and you thought “they are being lazy and just want a day off”?
Not only is Lexie’s body fighting her at every moment of every day, she is also fighting a mental war inside her head. If only you could see the bruises from the physical and mental war she fights every day. Maybe then it would be ok since she ‘looks sick’.
After about a year of this Lexie has to go on leave from work.
She physically can’t do it anymore, the pain is excruciating. Yet when you look at Lexie she appears to be tired and her smile looks forced but other than that ‘she doesn’t look sick’. Lexie hates her body, she feels like it has betrayed her and she feels like a piece of her identity has been taken away and she was robbed. She really liked her job, she was able to interact with others, provide for her family and provide great service to her clients , something she highly valued. But now that was all gone. She is no longer a ‘fun & active’ mother to her children. She is starting to feel like she doesn’t know who she is anymore. She feels weak, embarrassed, defeated, hopeless, and invisible not invincible anymore!
Was there ever a time you thought people were lazy and just didn’t want to work?
At this point, Lexie would give anything to be able to go back to work. To feel productive. To provide for her family. To be “normal” again.
Once she goes on leave the doctor’s start to take her symptoms more seriously.
She eventually sees a rheumatologist/Endocronologist/Neurologist and after more testing, she is diagnosed with Fibromyalgia. She learns that the symptoms of Fibromyalgia include muscle pain and spasms, fatigue, insomnia, brain fog (difficulty concentrating & remembering), tingling, stomach pain and digestive issues, feeling anxious and depressed and so much more. She feels relieved. She has answers. People will finally believe her even though she ‘doesn’t look sick’. Her doctor recommends a few medications to help her manage the pain and lift her spirits.
Finally, Lexie feels hopeful about the future… things can get better.
A few days later it all sinks in.
This is for life. This is permanent and will never go away. While there are things she can do to help manage her symptoms, there’s no cure. Sigh, no cure…ever!
Now that she has a diagnosis she decides to tell her Friends and family.
They have noticed changes over the past year and a half and most are supportive and kind. However, some simply don’t get it. She had a friend say ‘but you don’t look sick, you’re too young to have that’, even with a diagnosis a friend didn’t believe her. She was heartbroken. Another friend who seemed to have good intentions said: “well at least it isn’t something that is fatal, it could be a lot worse”. It seemed like this person’s heart was in the right place but their words cut deep. Maybe they just didn’t know the right words to say. Why, does it seem like nobody knows or understands what to say, how to act, and how to support.
Lexie’s symptoms eventually become more manageable but she still has days (more often than not) when she has a flare, the pain and fatigue take over and she’s defeated.
When we presented this letter, Lexie was an upbeat person, a wonderful mother, a successful manager who contributed to society and provided financially for her family. She was proud, confident and happy.
Thanks to her medication Lexie is blessed to be able to return back to work part-time but is completely exhausted after work and has to spend most of the night on the couch. You see, people with chronic pain/illness only have so many ‘spoons’ in a day. Doing an activity takes a spoon, and once the daily ‘spoons’ are gone, she is done for the day. She simply doesn’t have any spoons left. She is still a wonderful mother but feels guilty that she can’t be as physically active in her children’s lives. She still wears a smile but more often than not it’s a way to hide the pain. She is working through her feelings towards her body but at this point, they are definitely not positive, she still feels betrayed. Not all people are as fortunate as Lexie. They wake up with zero spoons, and end the day with zero. Others have zero, push through it, and end the day in negative spoons filled with pain, guilt, disappointment, and frustration.
Now that you have heard Lexie’s story, what do you think?
Do you think she is incredibly lazy or do you think she is an incredible fighter? Do you think she is whining or is she hiding much more of her pain than you realized? Do you think she is faking it? Or is she doing anything possible to survive and get through the day?
This letter was NOT written to get your pity or sympathy. It’s to show you a glimpse into the reality of living with an invisible illness. The people you think are faking or lazy or weak are actually incredible warriors. Each day they fight their bodies physically, mentally, and emotionally to take part in society. They put a smile on their face, show up and do their very best.
It is my hope that next time you see someone who looks healthy, you stop please before you judge. Maybe they ‘look fine’ but parked in a handicapped spot. Maybe they ‘sound fine’ but called in sick to work. Remember this letter and think about Lexie’s experience.
You don’t have to completely understand what someone is going through to be kind.
A chronic pain warrior, survivor, & advocate for others.
*** I want people to look at me and say because of you I didn’t give up!*