My body is marked from head to toe with physical evidence of my various medical battles. First and foremost, there is proof of the gift of life bestowed upon me by my mother nine years ago, an approximately 3-inch-long scar that runs along my lower abdomen. Then there are smaller scars on my neck and upper chest, where various tubes have been inserted, connecting my body to machines for life-saving dialysis and plasmapheresis treatments. My arms host a few more, even smaller, nicks accumulated from bad needle pokes, the dreaded arterial blood gas (ABG) draws, and even one or two resulting from an encephalitis fit where I yanked out my own IV. Just below the surface, the veins in my arms are so scarred, that these days my blood draws often must be extracted from other, more sensitive areas such as my hands or even feet. And, more often than not, bruises and small scrapes of unknown origin can be found along my legs and arms, a result of chronicanemia and post-encephalitis balance stability challenges.
These markings are representative of paint on a canvas, illustrating my personal history. And like the laugh lines that have begun to appear on my face, I wear them like a badge of honor.
They are each important reminders of the wounds that have shaped me, commemorating where I have been and how far I’ve come. Over time, they have become a familiar part of me, like the knots and markings of an old tree. A tree that has weathered the storm and remains standing, with branches reaching to the sky, daring to be struck down by the fate of nature’s wrath.
But if I’ve learned one thing from my days in the battlefield, it’s that pain doesn’t always leave a visible mark. Sometimes the most significant scars are the ones you can’t see at all. Carved from wounds not visible to the naked eye, these scars are made all the more painful in their ability to cut deep and infiltrate even the most resilient lines of defense. Undetected, and therefore exposed, these wounds are perpetually vulnerable.
My unseen scars are the markings of an internal battle; they are varied and range in depth and size. These dents in my internal body armor are a product of the cruel mockery the fates have made of my life. Most often they stay out of sight, but occasionally they manifest through unbidden emotions.
Like the hesitation to share extensive details of my personal history for fear of judgment or vulnerability…
Or the internal turmoil that accompanies making plans for a consistently uncertain future…
Through the inevitable paranoia that a cough, a headache, or even a bad day might be a precursor to something more serious…
And the haunting anxiety of constantly waiting for the so-called-other-shoe to drop.
These scars persist in influencing everyday situations and continue to haunt me throughout the night, when I wake up shaking and powerless, having dreamt, once again, of losing hours, days and months to an unknown entity.
These invisible scars have also become a part of me. Similar to the old tree that is uniquely marred with its own battle wounds, you may come to find pieces of my story in the external markings that appear across the surface of my body. However, the true victories and ultimate story of my survival is evidenced only by the markings within.
My scars, both seen and unseen, are a part of me that says I have survived.
The other morning I had to wake up at 4:30 a.m. to take my girlfriend to work so I could use our one car to make it to an appointment at our Local Job and Family Services — a different kind of appointment than usual as my chronic illnesses were currently making it impossible for me to work and I was applying for food assistance.
We were running late, which is typical for me, and as she was rushing down the three stories worth of stairs from our apartment, I was walking impossibly slow. My ankles felt like rubber, I felt unsteady, and in a general disoriented state. I assured her I was still on my way down the stairs, the same ones I lost my balance on a few months earlier, resulting in a fall and a broken foot. I told her, “I think I’m just having a bad day.”
When I got back home I started thinking about how many times she, and so many others, have heard me say I was a having a bad day. To the outside observer it would seem like I have a bad day just about every single day, and they wouldn’t be wrong in their assumption. But the thing is, a bad day, for me at least, can mean so many different things.
I wrote a post on Facebook about some of the meanings behind this phrase and got some amazing feedback and support from friends, especially those who are also learning to live with chronic illness. A few people asked me if they could share my piece. I was flattered and also inspired to really flesh out this list in hopes it could help more people feel less alone or understand what their loved one, employee, neighbor, or random person they meet may really be saying when they say it’s a bad day.
Things I want you to know about the phrase “bad day” as a person with chronic illnesses:
1. Saying I’m having a bad day is not a whiny complaint, it is a fact.
2. A bad day does not always mean I’m in a crappy mood, although it can.
3. Having a bad day as far as disease process can mean so many things. It could mean my ankles feel like rubber and I’m unsteady, my brain feels disconnected and I’m having trouble thinking or communicating, I’m in a ton of pain, etc.
4. I can have regular ole bad days as well. The dog messed on the floor, I can’t find anything to wear, my hair is doing that flippy thing on one side that I hate and I have a new pimple forming. You get the point.
5. I can have double bad days. That means little annoyances and feeling physically and/or mentally un-well at the same time.
6. I have a lot of bad days, but that doesn’t mean I’m grumpy all the time.
7. If I tell you I am having a bad day, that means I trust you. It means I feel comfortable enough to share the details of my illness with you. I am not looking for attention, what I really am say is “Please be patient with me, I’m really trying.”
8. If I say I’m having a bad day, please don’t tell me that someone out there has it worse. Trust me, I know that and I am probably more thankful for the small things in life like being able to walk and to have conversation and be independent because I have been in a place where I could not do those things and know that at any time I may be in that position again. Knowing it could be worse does not reduce my struggle in the moment.
9. I can have a bad day and still be productive, just not at the level of a well person.
10. I never know when I will have a bad day until it happens. I don’t plan it and sometimes don’t have any warnings. This causes me to be reluctant to make plans because I often have to cancel them. Know that I am truly sorry when I do. I want to be there.
11. Sometimes it’s easier to say I am having a bad day than to really explain what is going on. Having a bad day is way more relatable than telling someone that I was running a low grade temperature this morning so that either means I have tons of inflammation or an infection. So I will have to retake my temperature in a few hours to see where it is then and that I’m stressed about another doctor’s appointment or extended period of illness. Or that for some reason I am feeling really depressed and I don’t know why but I am trying to get up and function the best I can anyway. Or to tell someone a symptom and hear yet more unsolicited — and probably inappropriate — advice they heard from so-and-so who has a second cousin with such and such that I also happened to be diagnosed with.
12. All bad days are not of equal severity.
13. I can have a bad day six days in a row, but each day may be “bad” for different reasons. Monday I had a headache, Tuesday I had cramps, Wednesday the dog ate my sock when I showered. It can change everyday.
14. It can actually change throughout the day. I may wake up with a headache, rest and get rid of that, but the extra time immobile has caused joint stiffness and now it’s difficult to walk.
15. Even when I have a bad day I am still trying. I think this may be the most important for me. If I didn’t try I would be dead. I know this. I try by getting up and taking my medications, making the effort to move from the bed to my recliner, telling someone how I feel. Please don’t take me resting and taking care of my body as me not trying. It is the opposite. I am trying to be as well as I can be so I can keep plans, be witty and sarcastic, and get back to participating in life the best way I can.
This is my list and what having a bad day means to me. It is far from an exhaustive list as chronic illnesses are unpredictable and sneaky little buggers. I would love to hear what having a bad day means to you. I’m sure there are so many more I could come up with, but the words just aren’t there today. Most likely because electrical waves in a certain part of my brain are lower than the norm and aren’t responding to the stimulant medication I’m prescribed, or you know, it’s a bad day.
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I’ve been spending some time recently thinking about how to stay positive when living with a chronic illness and one of the first things that sprung to my mind was having a pet. Having a pet can help reduce your blood pressure and loneliness. I know there have been studies into how animals can help with health conditions, and you can see this in programs where animals are taken into hospitals for the patients/residents to pet to calm them and make them happy, and horses being used as therapy for people with disabilities. Lots of chronic illness bloggers write about their pets and I know I post about my cute cat Billy lots, so here is what I see as being the benefits of pet ownership when you have a chronic illness.
1. Unconditional Love
I know dogs are more obvious about this but cats, horses, Guinea pigs and I’m sure other pets also provide the unconditional love that is such a benefit when you are struggling with a health condition every day. It’s great having something waiting for you when you get home if you live alone and stops me from feeling lonely sometimes as I talk away to my cat. Cuddles, doggy kisses, and something that is actually excited to see you can make your day, or just make you smile.
When I’m looking after my sister’s animals I get cuddles from the dogs and one of her ponies! Looking out over the on the ponies field with dogs at my feet is just lovely! My cat stands at the door and cries when I get home, then she runs to a bit on the stairs where she can rub heads with me as I get up the stairs. My neighbor has told me that she only does that when I get home, so she knows it’s me. Plus she cries to say hello and rubs against my legs in the morning, almost tripping me up, but I know she’s pleased to see me. I’m convinced she can tell when I’m feeling bad and always comes to give me cuddles and has started sleeping on my bed recently and not waking me up in the middle of the night, but I’ll see how long that lasts!
Living alone with a chronic illness means that I rarely have to get up for things. I plan activities into my diary so I’m doing something everyday, but even when I’m feeling horrific I still have to get up and feed the cat, make sure she’s got water and give her her treats at night time so she stops crying. People who are housebound or who often have days when they can’t get out are forced to get up off the sofa/out of bed and see to the pet. Even just feeding a cat/hamster or letting a dog out for its business is a little bit of exercise which is a good thing for our bodies.
Having to look after another living thing can be a huge benefit when dealing with the mental health side of chronic illness as you have something else that’s alive to keep alive. During my struggles with depression I’ve thankfully steered away from suicide, but on my darkest occasion I took my sister’s dog for a walk and came back because I couldn’t bear the thought of anything happening to him if I made that decision. When I was an employment advisor I had a client who was struggling with severe depression, but she told me that it was her pets that kept her alive as she knew she had to look after them, and they made her feel more hopeful about the future.
Whether it’s in real life or online, people with pets tend to talk about them and bond over them. Most people will be able to say if they are a dog or a cat person and have an opinion about it, making it an easy way to start a conversation with someone and make new friends. Dog and horse owners will generally speak to each other when they pass while out for a walk, some areas even have unofficial dog walking groups where people just see the same faces every morning/evening so they become friendly. Kids will usually speak to you if you have an animal with you, and puppies can get more attention than babies when you take them out!
If I’m house and animal sitting for my sister I love it if I’m having a day when I can take the dogs out (even if it’s just for five minutes). It gets me into the fresh air, get a bit of exercise, and there are always people around who’ll smile and say hello and stop to chat. Online you can join groups, post pictures and chat about your beloved pets and how they help you thus gaining more friends, increasing happiness and giving you something else to do/focus on if you are stuck in the house.
Having structure can be a huge benefit for those living with a chronic illness. My occupational therapist and sleep specialist both said that going to bed and getting up at the same time every day is a good thing and can support better sleep, so having a pet to get up for can help you to do this. My cat knows when it’s bedtime and she comes into the living room for her night time treats. Dogs will usually get up at the same time everyday and having to feed and exercise pets can give structure to your day.
5. Self Care
Pets also remind us to look after ourselves. Running out of pet food means a trip to the shop or an online grocery order which will mean that you get essentials for yourself as well. Making sure that your dog gets out every day means you get out every day, supporting positive mental health and a bit of exercise. No matter how small the pet they all need something from us, which reminds us that we also need things and might need someone to look after us occasionally and support us asking for help. Animals are also brilliant at resting and I am trying to take some tips from Billy in this area (I think I should have been a cat in a previous life) but dogs are also great at resting when they need to. My sister’s Jack Russell will play with her son for hours, then when she gets tired she’ll take herself off and go to bed and rest until she feels up to a bit of play again. We should all take a page out of the book of our pets and take the time to prioritize resting, to do it wholeheartedly and then get back into things when we can.
There are also downsides to animal ownership, so I’ll share my struggles:
1. Having to look after something else
When I can’t walk to the toilet I still have to feed the cat. Ensuring that she is looked after uses some of my energy that on very bad days I should be using to feed myself or do other essential tasks. Having a dog or other bigger pet is much more exhausting. I don’t have to walk Billy a couple of times a day, her litter tray can stay uncleared for a day or two and she doesn’t need to be entertained. Dogs and horses need loads of attention, exercise, training and cleaning up after. The most that I have to do is feed her, cleaning up cat litter that’s been kicked all over the floor, or vacuuming up hair can be left because I live by myself. If you’ve got kids as well, then these things have to be cleaned up straight away and make even small pets more of a job than a joy sometimes.
Having a pet is expensive. From buying it in the first place, even rescue pets are expensive these days, to food and other essentials including insurance, microchipping and vet bills. What happens to them when you’re on holiday, or too ill to look after them? Dogs need leads, collars, bedding, cages, car seat belts, reflectors for dark walks, poop bags, toys… and those are just things that I can think of! Some of these expenses are regular and lifelong, and some are less frequent, but you still need to be able to pay for your pet and with the expense of living with a chronic illness this can be outside of your budget. I buy food, litter and pay for insurance for Billy and I could spend that money on other things, but I prioritize having her in my life so I cut out other things.
You can borrow people’s dogs to take them for walks or look after them for holidays on websites such as Borrow My Doggy which can cut down on expense, or borrow pets belonging to friends and family members. I love going to my sister’s house to get cuddles from her friendly pony, play with the dogs and then they lie on me for cuddles when I’m tired. Even the Guinea pigs make me smile because they make cute little noises.
3. Who helps to look after them?
When I go on holiday or away for a couple of days I can take my cat to my sister’s house to stay — she has to be limited to a room as one of the dogs wants to eat her, but my nephew loves her and gives her lots of cuddles and treats. I also have a friend who very kindly goes to feed her for me even though he is allergic to her! This isn’t too much of a problem for me, but can be for lots of other people. Do you have a friend or family member who will look after your pet for you if you’re away, in the hospital, or just too sick to look after them? Can you afford to put them into kennels, or get a dog sitter or walker? Small animals like hamsters and Guinea pigs can be easier to get looked after for you as they are easily transportable, dogs, cats, horses and other pets can be more difficult, so make sure you’ve thought this through before you commit to a pet.
I can only come up with three downsides to pet ownership and I know that I get so much from having my gorgeous cat, even though it can be hard work and creates extra tasks for me to do every day. I know animals can save your life and give you the will to carry on even when times are really tough, and I know the unconditional love you get from a pet can make the bad days seem much better, so I’m all for pet ownership when you are living with a chronic illness. Just make sure you get the right animal for you and that you have support in place to help you when you need it.
Let me know about your pets! What have they helped you through?
“You don’t look like you have anything wrong with you.”
This could be one of the most destructive statements to a person living with an invisible illness.
I have had it said to me thousands of times when I share my rare illness with others. Usually said with the best of intentions, but it can make or break a conversation about the illness.
As I write this and try to invoke my feelings on this one statement that I have heard so many times, my mind runs blank. It’s like my mind can’t even wrap around the statement. In the moment I usually shrug it off and either stop talking completely or try to explain further. Depending on the other person’s body language and tone of voice is when I will choose to dive deeper into the conversation. Now, as I ponder on it, it seems to just be an incredibly passive and un-empathetic observation.
Invisible illnesses are not so invisible to the ones living with them.
We see our invisible illness.
We see it when we look into a mirror. In every selfie we may take, we know what’s hiding behind those filters we use to try to hide behind. In every family photo we can zoom in on what makes us different. We sometimes shy away from the camera in this share everything world we live in, because we do no want to be reminded of what’s so obvious to us: our illness.
We feel the physical pain. We feel it every day. We feel the emotional pain. Sometimes it is more evident then the physical. We feel our family’s worry for us. We feel the guilt that we have because some days we wish we were more useful then what we actually were.
When you say to a person with an invisible illness that they look completely fine it can trigger a lot of feelings. The usually are negative feelings.
As a person living the invisible illness life it makes me question if I am just over-exaggerating my symptoms. That I just need to “suck it up” and stop complaining. I shouldn’t be this tired, I shouldn’t be in this much pain, because I look completely and utterly normal.
Why any doctor uses these words when speaking to a patient with chronic illness, I will never know. This phrase enrages me more than anything, mostly because of the context I’ve heard it used in. I’ve never had a doctor say it to me to help calm me down, for example, “This cut isn’t as bad as it feels, I’ve seen worse, you will make a full recovery, we won’t have to amputate your finger.” That’s not the context I’m referring to.
I’m referring to when I am pleading my case to a doctor in a doctor’s office during an appointment that lasts 15 minutes if I am lucky, when I am trying to convince him/her to take me seriously. I cannot live like this: in constant pain, unable to eat, and continuously dropping weight. I feel like I am begging for help. It takes every ounce of energy I have to plead my case in the hopes that I can convince them something else needs to be done to help me. I explain my history as thoroughly as I can and make it clear that I am not fabricating this. Just because all of the tests and procedures have not found any physical disease does not mean my body is not screaming in pain. I am not putting myself in this condition. And by no means, in any way, is this “all in my head.” But in the end, when it does not seem alarming enough to them, I hear the words, “Oh, I’ve seen worse.” I am usually caught off guard when I hear this, but a part of me wants to scream out loud and say, “I am sure you have, but how on earth is that going to help me!?” I am coming to you because I have yet to find a diagnosis, an explanation, an answer, or help.
Without undermining others’ conditions in any way, I am sure there are other patients you’ve seen who are worse, but do you think that will make me feel better? I’ve seen over a dozen doctors to date and I’ve heard these words far too many times. To me, it’s basically the doctor saying, “You’re not that bad, your problem isn’t as important as others’, it’s not as bad as you think.”
Until you are living in my body, feeling what I am struggling with, living in constant pain with no hope of finding a treatment, I don’t want to hear you say those words to me, or any other patient. Just because all your procedures and test results do not show a definite physical diagnosis does not mean there is not something wrong.
A compassionate doctor to someone with chronic illness, especially rare conditions, can make all of the difference.
Yes, I realize compassion shouldn’t be the first quality to look for in a doctor — medical knowledge and experience should. However, I have seen some of the best specialists in the country and I often leave feeling defeated and depressed.
Maybe my symptoms aren’t real? Is it all in my head? He is supposed to be the best, wouldn’t he know if something were wrong with me?
No! In most cases, I have found this is not the case.
It has taken years. A lot of money, time and emotional bandwidth has been spent — but I have finally managed to put together a health team of doctors, physical therapists and nurse practitioners that see me for me.
In the quest for answers I have learned that it is definitely not all in my head. I have several, albeit rare, very real conditions and diseases that are life-changing and debilitating. Chronic illness is enough to deal with on its own and of all the people who should be helping us cope, it should be our medical team.
The first step was allowing myself to require compassion as a characteristic I look for in building my healthcare team. For a long time I felt like I didn’t deserve the compassion. I felt like I was just a job to my doctors and that I shouldn’t expect them to care about my emotions. But then I realized that our health is very personal, very sensitive and in many cases encompasses most aspects of our lives. So we do deserve compassion. We deserve respect. And if the doctor we are seeing isn’t providing that, it is OK to move on and to search for someone who understands.
So, to the doctors who may come across a patient with a rare chronic illness, please dig deep and find compassion. How would you want to be treated if your life was being turned upside down by something no one seems to understand — or even have the willingness to try and understand?
I understand that I may be rare. I understand that I do not present like the textbooks taught and that you may have never seen someone with symptoms like mine.
But that does not mean I am “crazy.” It does not mean that my symptoms are not real.
When you treat us like our symptoms and conditions do not have merit, we start to feel like you may be right. But in a lot of cases you aren’t right. Please just tell me if you don’t know. Help me find someone who does know, or who is willing to learn. Do not dismiss my pain just because it doesn’t fit into your perfect box. I am a person and deserve to be treated with dignity, compassion and respect.