man and woman covered in colorful splatters of paint

When It Feels Like You're on the 'Sidelines' of Life as You Battle an Illness

3k
3k
7

If you were to look at me from the outside you would see someone who is fairly happy-go-lucky and doesn’t really let life get her down. You would see a vibrant, seemingly healthy woman, who just graduated college after working so very hard and putting herself through school. You would see a woman who loves to encourage others, loves her family, and also found her passion in teaching, and has a multitude of opportunities in front of her.

Yet, if you look close enough, you would see the struggles of someone who truly is a warrior and a fighter. I have been fighting for answers and fighting to just manage my life on a day-to-day basis. The years that were supposed to be my prime years, I spent questioning myself and questioning why I never truly felt “healthy.” After years and years of various hospitals stays, random doctors, tons of medication, missed diagnosis and wrong diagnosis, I was finally able to come full circle, and God put the right people in my path that helped me deal with my illness, and put all of these puzzle pieces together.

Reflecting, I sit here and ponder the question in my mind about what is the hardest thing about living with a chronic illness? Well, in my case, where I have lupus and multiple other related immune diseases, I would have to respond that it’s the way I feel about myself, in the sense that it has put my life on hold, and there were missed opportunities I lost as I was battling my own body trying to get answers. I was forced to sit back and watch friends and family start their own careers and families of their own. It was hard for me to sit back and realize I had bigger shoes to fill before I could embark on some of the things that were truly on my heart, and were considered “normal” for someone to experience in their 20s.

Yet, as contradictory as it may sound, I feel blessed to have had this opportunity to view my life from a perspective that most of my friends and family did not get the opportunity to. My immune diseases allowed me to pull out an inner strength that most people don’t ever get to tap into. There were so many times I wondered if my health issues were “all in my head,” or if I could just push through and force myself to live the life I wanted, that I would be fine and get over the health issues, not think about them, and get to enjoy life as a normal woman in her 20s. There were so many times I was extremely sick, and I would sit back and just cry over the lost job opportunities, missed class time, dropped classes, and even friends and family I lost in general.

You as a person are not meant to adjust to that type of emotional pain. Yet, it’s OK to feel and acknowledge all of it, because the more you ignore your disease the weaker your body gets. You have to learn to embrace it, and take notice, that way you can take the best care of yourself as possible in order to go and achieve the life and dreams that are on your heart.

As I sit here and write this, I am unable to go outdoors due to severe sunlight reactions. I also recently had to leave my teaching job due to uncontrolled chronic illnesses. Did it get me down? Yes. Do I sometimes feel jaded or envious of others as they post pictures of their children, and the wonderful things they get to do outside? I would be lying to you if I said it didn’t bother me. Yet, as I sit here, I realize I have been allowed to see life from a perspective that most never will get to. When all of the things that distract you from your heart or bring you temporary joy are taken from you, it truly allows you to focus on what is deeply within your heart and you grow so much more as a person, and see life in a totally different way. You don’t take those small moments for granted anymore, and the little things that I see people stressing over, seem very insignificant from my perspective. I relish the time I get to go outdoors, even if it is with sunscreen, or just at night. I enjoy the few hours I get pain-free, as well as the fleeting moments where I find breakthroughs with my illnesses.

It is very hard for someone who is not standing on the sidelines to truly understand empathetically what you are going through until it truly happens to them, because the reality is, when you have a chronic illness, the chronic illness comes first, and whatever else is on your heart will come second. This was very hard for someone as stubborn as me to accept, but I think people in general are made to feel that you can will yourself to put what’s in your heart first, yet that isn’t the case when battling a chronic illness. “Do not measure your success by what you have or have not achieved, measure your success by what you have overcome!”

So, I want to offer these words of support to others that feel the pain of being on the sidelines as they battle a chronic illness. It’s OK to feel sorry for yourself. It’s OK to feel like you have missed opportunities. However, relish in the fact that you are able to look at life from a perspective most will never have the opportunity to receive. Once you accept the fact that you have a chronic illness and there are “seasons” to your life when it can seemingly control your life, and other “seasons” where you feel like you are able to reach for the stars, then, in a sense, you have created the best opportunity there is for your heart and for your own physical healing and fighting: hope.

3k
3k
7

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

What It's Like to Live With an Undiagnosed Chronic Illness as a Full-Time Mom

24
24
1

My “alarm clock” goes off sometime between 5:45 and 6:15 a.m. It’s either the sound of a rambunctious 5-year-old pretending to be Tarzan or the cries of a 22-month-old waiting to be picked up from his crib.

It may sound like a typical morning for any mother as she pulls the covers off and begins another day. But for me, it’s another day of survival — a moment of picking my head up once again and praying I will have enough strength to make it through another day. 

As I take a deep breath and place my wobbly legs over the side of my bed, I remind myself to look for the beautiful moments in the coming day; the moments that remind me of the happiness and blessings I have in my life.

It’s been 11 years since I was diagnosed with Hashimoto’s disease. It has also been 11 years since I was struck with a debilitating muscle condition that waxes and wanes but affects my strength every single day. 

Some weeks are better than others. Some months I feel “decent.” These are the times I can shop for groceries with minimal issues and take my children to their activities with few cancellations.

But during other periods, I’m in survival mode. I rely on family members and a part-time nanny to help me through my days. The single flight of stairs in my home becomes a barrier to my being. My independence has been broken down and shred to pieces. I’m a burden to my loved ones and a hindrance to my children. At least, that’s how I feel at times.  

I’ve had quite an extensive workup with world-renowned doctors and medical facilities. I’m in the midst of more testing to look for rare mitochondrial diseases, along with other unusual causes of weakness.

My once outgoing personality has been silenced as I turn down yet another invitation because I am too weak to chase my toddler around an open gym. Then the guilt sets in; the guilt that my children aren’t being as enriched as much as other children as a result of my limitations. 

I speak little of my struggles to others for fear of sounding implausible. Family members listen to the fear in my voice, but even they can’t hear about it too often as they feel helpless and distraught. It becomes isolating and lonely living through this nightmare alone. I can describe in detail my heavy limbs and agonizing pain, but not one person will ever fully understand what it’s like to live life in my body.

There are times I am down as I think of what life would have been like had this nightmare never began. I try to snap myself out of these thoughts quickly and focus on the good. I daydream of better days to come. Days with a diagnosis and possibly a treatment.

I continue on day after day for my little boys who deserve a happy and carefree childhood. It may not be the life I envisioned, but it’s what I was given, and I’m going to make the most of what I have in the moment. 

Although this has been a long, rough road, I’ve learned to never take a beautiful moment for granted again.  

Lead photo source: Thinkstock Images

24
24
1
TOPICS
JOIN THE CONVERSATION

17 Things Healthy People Need to Hear During Invisible Illness Awareness Week

23k
23k
15

When a person’s illness isn’t easily visible, it can be difficult for outsiders to grasp the challenges he or she faces. “If you look ‘normal,’” they may say, “you can’t really be that sick.” Nothing could be further from the truth.

As the chronic illness community comes together to support Invisible Illness Awareness Week, which began on September 26, we asked our Mighty community what message they want to share to explain the truth about how invisible illness affects their lives and how their friends, families and acquaintances can better support them. By educating the general population, we can hopefully get closer to acceptance and understanding of the realities of invisible illness.

Here’s what they said:

1. “I appear as I want you to see me. I paint on my ‘I’m OK’ face every morning before school and walk around with a smile, but the truth is that I am in chronic pain, always struggling, but you will never see that because I do not want to appear in that light. You may believe I am faking being sick, but I am actually faking being well, and people need to not be as quick to judge.”

2. “Just because I’m young doesn’t mean I’m not disabled. I have had many older men and women yell at me and point to the handicapped sign and then they realize I have handicapped plates. Just because I’m young, doesn’t mean I’m not struggling. I didn’t realize disability had an age limit… someone should really tell my body that.”

3. “I don’t need you to understand what I go through. I just need you to be a compassionate human being like you would to someone who was fighting an illness you could see. Don’t pity, but be decent.”

4. “Just because you’re tired of hearing about us being sick or in pain doesn’t make us any less sick or in pain. I know you can get desensitized to hearing we’re in pain every day, but we don’t get the luxury of being desensitized to the pain. Please be patient with us, and remember we’re struggling and often smiling through pain.”

5. “If I’m out doing something and smiling, I’m running on adrenaline and it will take me several days to a week to recover.”

6. “My illness may be labeled invisible, but if you look closely you can tell when I’m not doing well. I use a wheelchair, I’m more pale, don’t talk as much, etc. so my illness really isn’t that invisible.”

7. “Though I may have the same illness as your aunt, your friend of a friend, whomever, I’m not going to be the same or healed by random internet advice. Please don’t be Doctor Google unless you’re trying to be supportive and educate yourself.”

8. “Just because an illness or condition isn’t widely known doesn’t make it any less serious than any other illness.”

drawing of little girl looking up with quote just because an illness or condition isnt widely known doesn't make it any less serious than any other illness

9. “This isn’t who I am. My illness does not define me. So even when I am sick, I will pull myself together. I will have a social life. I am determined to live my life to the fullest, sick and all.”

10. “Chronic illness can be lonely. It is easier to make no plans than to cancel plans, especially when friends and family members may not be able to understand. Please don’t give up on a person because their lives are busy with doctors, treatments, and seeking health.”

11. “Just because I can hang out with you seemingly normally for hours doesn’t mean I’m not in pain inside.”

12. “We don’t want unsolicited advice on how to treat our diseases! We don’t care that someone you ‘know’ has or ‘had’ the same thing. Everyone is different. Please keep opinions to yourselves unless specially asked a question.”

13. “My illnesses may be invisible, but I am not. My illnesses may be invisible, but my voice is not. My illnesses may be invisible, but the dreams I once had, the faith I once had, the person I once was — they are not.”

14. “I push myself well beyond what my illness truly should allow me to. I try to be the best wife, mother, coworker, and friend I can be. I probably disappoint myself way more than I do you.”

low battery running with text next to it i push myself well beyond what my illness truly should allow me to

15. “I am not going to get better. I think people have a hard time getting that. For them, they get sick and then a few days or maybe a week later they get better. When you are still sick months, years later, people have trouble with that.”

16. “Ask questions before you judge me. I’m happy to share my story and want to educate others. My pain is real so if you don’t understand get to know me.”

17. “Using the sentence ‘I believe you’ will be one of the most empowering things you can say to someone you care about who is struggling.”

23k
23k
15
TOPICS
, Listicle,
JOIN THE CONVERSATION

The 'Chronic Sorrow' You Feel When Friends Disappear After Your Child Falls Ill

3k
3k
2

I have a 13-year-old daughter named Bonnie. She is beautiful, funny, and grumpy — all those things a teenage girl should be, but she also has a chronic illness.

I had no idea our lives would pan out like this. She was an average kid until around the age of nine, when some annoying-yet-manageable niggles turned into complex health problems and a chronic pain condition.

Unfortunately, there’s no single cause or clear diagnosis that sums up Bonnie’s health problems. She’s under the care of four different departments at Great Ormond Street hospital and has required frequent, sometimes lengthy, hospital admissions and four surgeries so far. This year we have spent a total of 12 weeks in hospital, and we average around one outpatient appointment a week.

Bonnie has not been able to attend school in 16 months and I, thankfully, work at home. We are a close little unit. Planning any sort of life around a chronic condition is a huge challenge. Her health and pain levels are unpredictable, so planning ahead is difficult. We often leave events early; we frequently cancel at the last minute. So often it’s just us, our family of three, just hanging in there, just coping.

None of this is “normal.” We know that, but for now, and possibly for a long time to come, this is our normal.

People expect illness to be finite. It should come with an end date. People should get better, especially kids. But the truth is for us, and for many families just like us, chronic illness can last for years, or even for a lifetime.

When your child is ill, you initially look to your family and friends for support – both emotionally and practically. To begin with, this was absolutely the case. Friends brought us dinners and treats for Bonnie, they were valuable sounding boards, they mopped up tears, they made coffee, they were there for us.

But after years of living like this, many of our friendships have dwindled, both for Bonnie and for us. Girls who I had imagined she would be friends with forever have simply walked away when things got tough. The mum of one emailed me to suggest her daughter needed “time out” from their friendship.

People tire of illness. They want positive news and uplifting stories, and when you have nothing positive to contribute they lose interest. But our sorrow and stress isn’t contagious.

Lorna is mum to a 14-year-old girl with cerebral palsy and chronic bowel and bladder disorders, explained to me “I think the medical bubble we live in, the challenges we see, the highs and lows, means that we live different lives to our friends. It’s very difficult to go out with friends and talk about their work problems, etc., when your head is full of worry and exhaustion. The continuous juggling of medical appointments, treatments, care and paperwork leaves only the tiniest remains of your happy, healthy, funny former self that they used to know.”

Back in the 1960’s, a family counselor called Simon Olshansky came up with the term “chronic sorrow.” His work was with parents of kids with developmental and learning problems, but these days the term is also used for parents of a child with chronic illness.

Olshansky observed that the sorrow parents experience as they observe their child missing out on milestones, the worry about their future, mixed in with their natural love and pride for their child, has a profound effect on the emotional wellbeing of parents – quite literally leaving them chronically sad, a lot of the time.

When you feel emotionally drained from caring for someone in pain, from endless nights in hospital, from talking to doctors, from battling with schools, it takes a while to notice that friendships have dwindled. We become isolated, lonely and all consumed by the negativity illness can sometimes bring. We don’t have the time or the energy to reach out to friends, but we do need them to reach out to us.

Death is terrifying and devastating, but it has rituals that can help us deal with it. We send cards, we buy flowers, we attend funerals, we know how to pay our respects. Chronic illness has no guidelines, no rulebook. It makes people uncomfortable; friends feel guilty that they and their kids are healthy and happy. They run out of words to ask how Bonnie is, or how we are coping.

Sabina, who has a child with complex health needs, told me “I see certain friends less now because they didn’t try to help, understand or be there for us, or because they were completely insensitive and brushed our issues aside as if they were nothing. That really hurt. The whole journey has made me re-evaluate life, friendships and relationships.”

But it’s not all bad. The friends who are still beside us are the very best we could hope for. Many of them have been through their own traumas, which has perhaps given them a better understanding of what we’re dealing with. Bonnie’s two best friends are, quite simply, superstars. They visit her in hospital and don’t notice the machines, drips and beeps.

I joined a closed Facebook groups for families with similar conditions, I cannot even begin to describe how much it helps to talk to people who are living through similar issues as you. These groups are extremely helpful, but it’s not the same as the support you need from your friends – the sort of friends who knew you before your child was chronically ill.

A version of this post was originally published here on The Standard Issue

3k
3k
2
JOIN THE CONVERSATION

6 Things I've Learned Along the Way With Chronic Illness

210
210
0

I have learned a thing or two along the way. Forgot some and learned again. Learned the hard way. But learned.

I have learned to pace myself or I will suffer the consequences of not doing so. I have also learned there are times I am willing to suffer the consequences on specific occasions if I have the recovery time. Like I went bowling with work for a charity event because it was for charity and I love bowling, but there is a mighty price to pay for bowling; I happened to have time off after to recuperate.

I have learned to stay within my limits. However, I have learned this doesn’t mean not doing things or trying new things, or testing my limits on new things. With exercising, for example, you have to find where your limit is to find your starting point — they say the “edge of the alarm” pain. That is a limit. And go from there, slowly and steadily increasing as you go along. Well, life is like that. I want to do something and it depends on my existing pain and my existing energy and now time I may have after… and therefore where that limit may be. So I give it a go and nudge it a little to see if I can in fact do that thing that day or not. I learned limits are there to remind me not to exceed them, although it happens sometimes, and they’re not so much there to limit me from living my life.

I have learned that work doesn’t define who I am and my self-worth. With chronic illness, so often we have unstable work situations and careers. It is such an unfortunate thing when we have so very much to offer. I had to learn that I am not what I do. I was on long-term leave for a couple of years and in that time my self-worth took a hit and I had to redefine myself without work. I had to understand my innate worth. We are far more than what we do for a living. So I have taken a part-time job that eases my health and maybe it will do nothing career-wise, but it is good for my well-being.

I have learned my mental and emotional well-being are just as important as my physical well-being, if not more. Chronic illness is stressful and we have to understand the impact it has on us mentally and emotionally. As well, of course, as manage the mental illness disorders we have. I have depression associated with chronic pain, which I ignored and thought I could handle on my own for many years. I spent many years battling a brain that simply didn’t want to survive. Exhausting. Addressing this directly and taking medication for it not only helped with the depression, it has affected how I cope with the pain.

I have learned self-care is one of the most important things. We need to take care of ourselves and put ourselves first once in a while. Especially on the bad days, we need to take care of ourselves. Took me a long time for this one because it seemed I should spend every extra moment being productive since it took me so much longer to get things done. I’d feel guilty if I did self-care.

And I have learned to rest when I need it and to not feel guilty about that. We need to conserve our energy and manage our fatigue… it is part of pacing. Again… that guilt thing plagued me for some time. Finally I understand it is necessary for me to take care of myself.

We learn. We adapt and we cope. It is the chronic illness lifestyle. I refer to it as a lifestyle because we live in a specific way to manage our chronic illness. A slower paced lifestyle, one where we have adapted and coped to live the best we can with the illnesses we have, with that desire for improvement of course. What I have learned is, from my experience, our perception of our illness evolves as we cope, not to mention we gain a certain level of acceptance.

210
210
0
TOPICS
JOIN THE CONVERSATION

6 Things You Can Do to Improve Your Experience With EMS

65
65
1

Being an EMT and ski patroller the last three years, I have seen a fair amount of illness and injury. Of those I’ve treated, some have had cancer, arthritisdiabetes, and some more unknown conditions like dysautonomia and CRPS. On top of that, I have my own set of medical conditions. That being said, I have been on both sides of the situation: a patient and a provider. I have had some really good providers and I’ve had some that were really awful.

Problems with emergency medical services (EMS)  generally arise due to a lack of understanding on the part of the medical provider, so here are six things that individuals with chronic illnesses can do to prevent such issues from occurring.

1. Be prepared with information about your condition(s). This can actually be written out in the form of pamphlets, wallet cards, and/or articles or you can verbally explain your condition to your providers. Be prepared to do this clearly and concisely. In the heat of the moment, this may be a challenge for some, so having materials prepared in advanced can be very helpful for everyone involved. You are your own best advocate!

2. Have an updated medication list compiled. Many individuals with chronic illness take medications and/or supplements. Be sure to list everything you are taking. EMTs and medics will ask for the names of all your medications. If you have a list, it makes it easier for the provider to compile the information for the trip sheet because they can just copy it off the paper. Consider keeping an electronic copy on your phone for when you are out and about. It is very prudent to put the medication list and the information of your conditions in one place, so you know where it is in the event of an emergency.

3. Consider a wearing Medic Alert bracelet. This is a really good habit to get into especially if you have conditions that could render you unable to communicate for yourself. There are many different styles and colors out there to make it your own. My alert bracelet is a sporty, silicon, blue/lime green band with a QR code that, when scanned, pulls up an electronic medical record that you can customize with as much or as little information as you want.

4. One of the most crucial thing for both patients and providers is patience and encouraging a environment to teamwork. You could be the very first patient they’ve had with your condition and they may need to take some time to work with you and learn. If you score a provider that is willing to learn, take the opportunity to educate them. Other patients with the same conditions that have them as a provider later down the road will thank you. Who knows? You may even have the same provider at a later time.

5. I always try to maintain a good attitude (even though it doesn’t always work out that way) when dealing with a medical provider during a time of crisis. Everyone with chronic illnesses (or everyone who has ever been sick for that matter), knows it is extremely challenging to be pleasant when you aren’t feeling well. EMS know that if you’re in the back of their ambulance, you are probably having an especially rotten day. You don’t have to be all “sunshine and rainbows,” but if you treat them with respect, you deserve the same in return.

6. Lastly, remember EMTs and paramedics are human. They have their bad days. They may have dealt with something unimaginable prior to come to you. We make mistakes and sometimes at the end of 24-hour shift, we’re just plain tired. Many chronically ill individuals deal with at least one provider that hasn’t helped them, accused them of faking, or was just plain nasty. It’s unfortunate, but it happens.

Prepare yourself using some of these tips and hopefully the next time you require the services of EMS, it will be a smoother process!

65
65
1
TOPICS
, , Contributor list
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.