passengers on an airplane

When a Passenger on My Flight Pointed Out My Bag Full of Medicine

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Recently, I went on a trip to Miami. I had been looking forward to it and couldn’t wait to be on the beach, relaxing and soaking up the sun. The problem is I cope with a chronic illness and anxiety so traveling is hard.

I was so worried the week before the trip. I worried about having all my medicine in place and my symptoms flaring up. I worried about being so anxious and so sick I wouldn’t be able to enjoy myself. It’s difficult to live with a chronic illness and travel. That’s why I do it so rarely, but it’s also something I don’t want to be deprived of. It’s a mixed bag and it’s not easy, especially since anxiety and chronic pain are my constant companions.

The day my husband and I left to Miami, I was feeling worse than usual. The stress of traveling doesn’t help my symptoms. I had a migraine and pain in my lower back, shooting down my legs. I took some medicine before getting on the plane, hoping it would relieve the pain and anxiety.

I slept for the first hour of the flight, but when I woke up, I knew something was wrong. I was extremely nauseated and felt as if something was pulling me down. My vision began to darken, and black spots formed in my eyes. I got up and told my husband I couldn’t see. I walked a few steps towards the flight attendant and said the only thing I could think of: “Something is wrong. I can’t see.”

I don’t remember the moments afterwards because I passed out. When I came to, I still couldn’t see, but I could hear people above me. There were two nurses on the plane that day, and they were both tending to me. They fitted me with an oxygen mask, and my sight slowly returned.

They asked me questions, and I answered as best as I could with head nods while my husband filled in the gaps. What had I taken? How much? What were my symptoms? Why had I taken the medicine? Why was it prescribed?

Suddenly, the passenger I had been sitting next to told the nurses to look at the bag in my seat.

“You should really take a look at that. That’s all her pills,” he said somewhat judgmentally.

For anyone who hasn’t lived with chronic illness and pain, seeing a bag full of medicine could be, well, worrisome. They pulled the bag out, and I could hear my husband trying to explain that I suffer from a multiple health issues.

Later, my husband told me everyone had been shocked while passing around the bag. I was embarrassed about the judgment, but I was also so scared. I had just experienced something terrifying — life-threatening even. For the rest of the trip, I leaned against my husband, unable to think clearly or speak. I was wheel-chaired off of the plane and met by paramedics at the gate. They began to ask the same questions about the medication, and they even asked if I take it to “feel doped up.”

When I look back on this, I realize how difficult it is for others to understand chronic illness. Others see things that are everyday for me — like taking a lot of medication — very differently. I’m grateful for the help that was given to me, but at the same time, the judgment and misunderstanding was frustrating and hurtful.

People see a bag full of medicine and assume things about you. They see a young, healthy-looking woman and assume a bag full of medicine equals drug addict — not a sick person. But they don’t know what it’s like to live in this body. They don’t know what I have to endure daily and what it takes just to make it through the day.

The truth is, I’m really sick, so I take a lot of medicine. It’s not hard to explain, but it’s hard for others to understand.

Lead photo source: Thinkstock Images

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When I Chose $20,000 Over My Health and Happiness

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Where do I go when I’m faced with life’s biggest questions? The beach. 

I can think and find my answers to life’s biggest struggles when I’m right in front of the ocean. We live about 50 minutes from the Jersey Shore, and it remains my place of peace when things in my life seem to be unravelling.

My biggest fear after I left the Pain Rehabilitation Center at the Mayo Clinic in Minnesota was how I would be able to work with chronic pain. I truly didn’t believe I would be able to be a social worker while managing pain naturally. I had an intense routine I followed daily to manage my pain without it managing me.  

Jessica Martin with her child

I spent about six months or so not working once I left the Mayo Clinic and used this time to truly focus on my health and management of chronic pain. Every day I followed a schedule, and eventually, I didn’t focus on my pain as I once had after happiness started to truly enter my heart and soul. 

I felt alive for the first time in 20 years. I was exercising, practicing meditation twice a day, taking walks, reading and finding all the things I thought I had lost because of chronic pain. I was thriving despite chronic pain.

However, I was a college graduate with my degree in social work, and I knew I had to start applying to jobs in my field after my six months of getting my chronic pain under control. I was terrified. I knew I couldn’t do a 40-hour week, but I needed health insurance, so I had to make sure I worked at least 32 hours a week. I was so afraid that work would take away all the progress I had made in my management of pain. 

I went on an interview at a medical facility that had patients with dementia, mental illness issues, cancer, autism — you name it. The job seemed amazing, and I loved the facility.

During my interview, I was honest with my would-be boss and explained I had chronic pain but was managing it naturally. I told him I would need about two breaks a day, and he was very impressed with my honesty and how I managed chronic pain since many of their patients also had chronic pain.

He then began asking me questions on how I managed pain and if I would be able to teach some of the patients the techniques I used such as meditation. Bingo! I was pumped. I wanted to just tell my future boss that I would take the job and start the next day, but then fear crept in and I asked him if I could have a couple days to think about the position. 

The following day, I sat at the beach and asked the universe if I should take the job or not. My intuition was so strong that I really didn’t need to ask anyone their opinion. I knew I wanted this job, and after eight hours of sitting on the sand at my favorite place in the world, I drove home and called my soon-to-be boss and took the job. 

My intuition was right on point, and I loved my job. I was able to incorporate my chronic pain management tools into my career, and I was helping people and making a difference. I was proud of myself.

Out of the blue one day, I received a phone call from a different facility asking me if I was interested in interviewing for the director of social services at one of the most famous nursing homes in our area. The director offered about $20,000 more than I was making at my current job, and my ego took over and I agreed to be interviewed. I was managing pain amazingly, and I was in a great place — mind, body and spirit — so I thought, “What the hell, I may as well at least go for an interview.” 

Here’s where I made one of the biggest mistakes in my career: I took the job despite my strong intuition to stay where I wasn’t making a lot of money, but I was healthy and happy. I gave my two weeks’ to my boss at my dream job and began working as the director at my new job. 

By the end of my first week at my money-making, high-profile job, I knew I had made a huge mistake. I was working more than 40 hours a week with no breaks, no time with my patients and no time to incorporate my chronic pain management tools. My self-esteem began to spiral downwards as my pain began to increase by the day. 

I was miserable, filled with regret and in tears every night of the week. Weekends were no longer fun because I was no longer taking care of my health five days a week.

I chose money over my health and happiness. 

Within a year of my $20,0000 mistake, I found out I was pregnant and gave my two weeks’ notice. My boss wasn’t a huge fan of me anyway and told me on a daily basis, “Jessica, you are just not a good sales person. We need our numbers up. We need more people who will pay privately. Your focus needs to be on our facility.”

No, I am not a good sales person. I couldn’t agree with this person more. I was a social worker. I hated sales, I hated shopping and I went into social work to help people, not help a business make money.

Chronic pain has taught me more lessons in my life than any other ailment or event has. This was another hard lesson I had to learn. If I could go back in time, I never would have chosen money over my health and happiness. I would have followed my intuition and stayed at the job where I made little money, but it was a job that made a difference in my health and the health and happiness of those I worked with. 

I didn’t go to the beach when offered this $20,000 mistake. Lesson learned. There is nothing in this world that’s more important than your health and happiness. 

If you’re lucky to find a job where you can manage your invisible illness, do not leave no matter what! Don’t make my $20,000 mistake.

Follow this journey on No One Gets Flowers for Chronic Pain.

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The Secrets of Chronic Pain You Can't See From the Outside

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Sharp, pinching, burning, shooting, dull, aching, prickly, throbbing. You name the pain, I’ve felt it. I’ve been living with chronic pain of varying degrees for over 20 years, but you can’t tell just from looking at me. From the outside, I look healthy, vibrant, fit and young, but the story on the inside could not be more different.

Twenty years of pain has made its mark on me. It has torn through me like a hurricane, destroying me and exhausting me. It has drained me, scarred me, and left its imprint. It took and stole things from me that I have not recovered. There is not one part of my life that hasn’t been affected by the pain. It has changed me. It created a void that, even now, I have not fully come to terms with, especially when it comes to relationships. There has been so much loss. 

I used to blame myself, believing I developed pain because of all the things I had done wrong. I punished myself for it because who else was there to punish?

I am not the same person as I was before the pain. I am more serious, less flirtatious, less funny. I am less me than I was before. I have lost parts of myself that I can barely recall. I find myself recoiling from things that would previously bring me joy because I am so afraid of the possible pain that could follow. The pain has taken its toll and left me to rebuild from the rubble. 

In my darker moments I still feel shame about my pain. I feel less than, inferior, defective, useless, undesirable, uptight. I have felt this way for years, and regardless of all the positive things I have done for myself, that feeling doesn’t just simply disappear. Pain ate away at my self-worth and self-esteem for over half of my life. Rebuilding isn’t happening overnight, it is taking years.

Living with chronic pain that is invisible to others can be defeating. No one sees and no one truly understands. The weight of carrying this pain around on my own has been unbearably lonely at times.

Today, I no longer feel the need to blame or punish anyone. I am going to continue to reclaim myself, one step at a time. I am going to add new pieces to the mosaic that is me. The pain has shaped me, but it has helped me grow as well. It has forced me to grow. I may not be as bright and sparkly as I used to be, but I am kinder, more compassionate and more empathetic. I am true to myself, I listen to body and I respect myself. Every day I work to lessen the feelings of defeat, of missing out, of loss, but they do remain. They are part of the grief that comes with losing so much of yourself to pain and illness.

This blog was originally published on Kira Lynne.

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When My Boss Mocked Me For Being Too Ill to Work an Extra Shift

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I’d just finished a 4-hour shift, which realistically was more like five and a half hours. My boyfriend and I had sold our second vehicle to help pay some bills. We’d been getting by fairly easily with one car, but it usually meant I had to sit around after work waiting for a ride. On this day in particular, I’d taken a seat at the bar amongst the regulars who were lost in the hockey game on TV. My boss came running over, begging me to cover a shift later in the day.

“Come on Kate, it’d only be a few more hours.”

I’ve come to realize there’s a delicate balance between communicating your symptoms and complaining about them. I thought I’d done a relatively good job of explaining just how much pain I was in by the end of my 4-hour day, and everyone was very much aware of my condition. I calmly reminded him of my situation and told him I needed to get home to rest.

He turned to my manager and they both started to laugh. They openly mocked me in front of my co-workers and a few customers. They thought it was simply hilarious I couldn’t physically manage to work a full day.

I left work that day feeling utterly humiliated. To them I looked like a perfectly healthy 23-year-old woman. I looked like all of the other waitresses who were perfectly capable of working a 10-hour day. They didn’t know I went home to a painful physical therapy regimen everyday after work.

They didn’t know how badly I wanted to work those extra hours, how badly we needed the money for medical bills.

And they had absolutely no idea how cruel their “joking around” actually was.

Since that day, my mind’s been in a constant battle over what people think of me.

Do they think I’m a loser who sleeps all day?

Do they think I’m “faking” how much pain I’m in?

Do they think I’m just being lazy?

What bothers me most is they’ll never know the person I once was. They’ll never know the girl who worked two jobs while going to school. They’ll never see the girl who volunteered for every shift she could get.

But the cold, hard truth is I’ll never be that person again.

If only they knew, if only they could see the real me.

It’s been about six months since I quit my job. I developed a nasty pneumonia which left me bedridden for weeks, and my chronic pain has only worsened since. I’m determined to one day soon make it back into the workforce again, hopefully in a job a little more suited for the chronically ill (if that even exists).

I’ve learned so many things over the course of my illness, and I take each lesson to heart. No one is ever going to know how much pain I experience in a day, how nauseous I get, how exhausted I am all of the time. No one is ever going to know what it feels like to live a day in my body, so how could I possibly expect them to fully understand?

It’s up to me to find a balance and live as happily as I possibly can.

I can’t sit around wasting what little energy I have on the opinions of others.

It’s entirely on my shoulders to fight through the pain, the fatigue and battle this disease to the best of my ability.

I quite often find myself filling out job applications. I get about halfway through before I realize I’m dreaming. It’s not realistic right now. My body needs time to heal, time to process. There are days when I want to give up, when I want to crawl into bed and never come out. Some days I have to drag myself to the yoga mat just to do my physiotherapy, but right now it’s the only weapon I have. The only thing I can do to fix my situation is to get my health back on track. And in doing so, I’m slowly rebuilding the gratitude for life that I once had.

You don’t have to look sick to be chronically ill. There’s an assumption in our society that if you look able-bodied, you should be able to work an 8-hour day. I suppose that may be the case for most people, but there are thousands of us out there struggling to do so in silence. Chronic pain, depression, social anxiety — you never truly know what’s going on inside someone else’s body.

Don’t be the person that causes someone to go home feeling humiliated, just because they appear to look healthy.

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6 Things to Remind Yourself When Chronic Pain Wears You Down

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Chronic pain and fatigue can really wear you down, whether it’s fibromyalgia, chronic fatigue syndrome, lupus, or something else. Living in chronic pain can start to tear at your soul, it can make you feel worthless and unworthy, but you are not. As I’ve talked with many chronic illness warriors, there are a few thoughts I feel like we all need to be reminded of.

1. You are good enough. It seems like no matter how hard we try, those of us with chronic illness constantly struggle and think that our best is not enough. We are not good enough. But, we are good enough! As Stuart Smalley would say “You are good enough, you are smart enough, and doggone it people like you.” Stop focusing on what you aren’t able to accomplish and think about all the amazing things you are doing despite your illness. You are not just good enough. You are amazing!

2. You can overcome this! It’s easy to let chronic illness bury you, to decide that it’s not worth fighting and to just give up. But, you can overcome this. You may be stuck with chronic illness for life, and you can’t control the pain or the fatigue, but you can control your response. You can choose to be happy despite the pain and illness.

3. You are not to blame for your illness. But, you are responsible for your health. Educate yourself about your diagnoses and look for treatments that may not be offered by your doctor. You are not responsible for your illness, you didn’t cause it, and you certainly don’t deserve it, but you do still have some control. You can choose to either just follow along and take whatever treatments are given, or you can become an informed patient and seek out the best treatments for you. Stop trying to take responsibility for things outside of your control, and take control of the things you can.

4. You need to keep living! Keep feeding your passions and find new ones. Find reasons to keep fighting. So many Spoonies I’ve talked to have found new passions after they became ill. They discovered things that they never thought to even try, but when they found themselves limited by chronic illness they tried something different — they picked up a camera, they tried digital painting, they took up knitting, they started a blog — and now they not only have something new they enjoy, but in many cases they’ve found ways to turn those things into an income stream. You aren’t done yet, you just have to find the new direction.

5. You can control how others treat you. How others treat you is within your control. When people treat you poorly you can walk away. You can set boundaries with those around you, even those closest to you. It’s not easy, especially when you are dealing with people you live with or see every day, but it’s never too late to let others know what you will tolerate, and to stop tolerating those who would overstep your boundaries.

6. You still have something to give. I think when we feel we have nothing left to give, it can become really difficult to hold on, and a lot easier to consider letting it all go. It’s often hard to separate yourself from who you were. We often wrap out identity around what we do, how we make a living, the roles we take, rather than who we really are. Even if you can’t do the things you used to do, you still have much to give. Even if it’s nothing more than a smile, a kind word, or an ear to listen. You have something to give.

This post was originally published on Counting My Spoons.

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The Unique Challenges of Being Young and Chronically Ill

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I think sometimes people forget that a young person can also have a chronic illness or chronic pain. It’s hard having to explain that I am in constant pain at such a young age. I always get, “But you’re so young!” Or, “You don’t look sick,” or even better, “You need to tough it out sometimes. Just think how it is for people who are older than you.” These comments are hurtful. It is hard enough dealing with medical problems at such a young age, and also dealing with other people’s opinions of my sickness. I realize that I am going to spend the majority of my life struggling with my illness. That’s not easy to swallow in itself. As a young person, I wanted to be able to do anything and everything I could before I aged and became less mobile. Unfortunately my body had other ideas and with the crushing diagnosis of fibromyalgia, that is not possible.

Being so young, I also get a hard time from doctors. I was told only a few months ago, by a pain specialist I was seeing, that I was too young to be taking pain medication. I have tried every therapy and drug out there for relief with no luck. It seems like some doctors think you have to be older to deserve pain relief. Why is my pain not as important to treat as someone’s who is older than me? Doctors seem to have the impression that young people should be tougher as well, or that stronger medication is not needed. Going in to the doctor complaining of pain will often get you labeled a drug seeker or you will flat-out be refused because of your age. The stereotype that young people are the only drug abusers is simply not true, and doctors should treat people with chronic illnesses with respect and compassion no matter their age. Respect and trust between a doctor and their patient is vital to receiving good care.

My social life is very small due to my pain. It seems like telling friends or some family that you are tired, in pain, or don’t want to go out and put yourself in pain isn’t a good enough reason to miss an outing. If you’re young, you’re supposed to be able to go strong and party hard… right? Not for young people with chronic illness. Everyone thinks young people bounce back faster from strenuous activities or late outings but the truth is with chronic illness, that doesn’t happen for us. For myself, recovering from sharing a bottle of wine with my girlfriend takes a good two days of rest and non-strenuous activity. That’s only sharing a bottle of wine sitting in front of a nice relaxing bonfire! For more strenuous activities, such as swimming or bowling, it takes even longer to recover. I have to pick and choose what to do based on how much time it’s going to take to recover and whether the pain and exhaustion that follows is worth it or not.

I feel that the young part of the chronic illness community often gets ignored, or treated as not as important because we are young. This is another hurtful thing to see. Young people are not faking it, or lesser because we are younger. I wish everyone in the chronic pain community would respect each other equally. We are all fighting a battle against an illness and should band together. Young, old, and everything in between, everyone with a chronic medical problem deserves to be equally respected, listened to, and trusted. Don’t you agree?

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