I have been struggling with Lyme disease for almost 2 years, and my ‘strength reserve’ has been running on low as I am in a constant battle for my patient rights, access to proper treatment & trying to regain my health.
On top of these every day struggles, I have experienced some major setbacks in the last several months. I had to go on full-time disability and give up on my current career goals, I am facing financial difficulty and am having to seriously look at selling the house I worked so hard to buy myself, I learned it may be unwise for me to have children as they will most likely be born sick, and within the last couple weeks the relationship with the man I was in love with collapsed under the burden of my illness.
I found myself in unfamiliar territory – having feelings of defeat, worthlessness, and total despair. I have worked hard my entire life to get to where I am, and in a matter of months it all came tumbling down around me because of my illness and I couldn’t do a damn thing about it. I found that I just didn’t know how to cope with the ruins of my life. So I ran away from my problems. Literally.
I hopped on a Via Rail train to Vancouver and by being an anonymous traveler, I hoped to escape my despondent reality for a time.
I purchased a middle class seat rather than economy and found that the train ride was quite comfortable. I highly recommend train travel to fellow Lymies – lots of space to move around to avoid myalgia & joint inflammation, there are very comfortable sleeping berths & the gentle sway of the train encourages restful sleep, and meals & beverages are prepared for you. The staff are exceptional, very friendly & helpful.
It was a wise decision for me to take this solo get-away. I needed time to get past the denial stage, allow myself to process the sadness, needed time to grieve, and attempt to heal my wounded spirit. As much as this was necessary, it was also a very difficult trip and was physically hard on my body. And it turned out that trouble followed me no matter where I went.
I have never in my life been scolded by so many strangers than while on this sojourn. Here’s a few things I experienced:
While waiting at the Vancouver ferry terminal I had a stranger scold me that I didn’t turn my vehicle off quick enough and she was concerned about the air quality (we were still on the expansive mainland where we had a 90 minute wait to board – as if I was going to be leaving my vehicle running!)
When arriving at the return ferry terminal on the island I was scolded for being 28 minutes early instead of the recommended 30 minutes. (I wonder what she said to the 10 cars behind me?)
Even though I had asked permission to use a temp parking stall while I was carting my luggage to my hotel room so I wouldn’t have to lug it so far, the front desk of a Vancouver hotel called my room to tell me to hurry up and move my car; apparently I wasn’t moving fast enough for them. (They didn’t seem to be nagging the owner of the van parked behind me that had a disability parking pass hung from the rear view mirror. I didn’t have mine pulled out of my suitcase at that point.)
The check-in attendant at the airline I used to get from Vancouver to Calgary scolded me because my suitcase was one pound overweight. She glared at me as if she was personally strapping it to her back for the whole flight.
When pre-boarding the flight, my way was barred by the flight attendant who was waiting on a lady collapsing her walker. I wasn’t allowed to pass until that lady did. I could see a sardonic look of curiosity at why I was pre-boarding. Not one flight attendant offered me assistance. (Luckily the Gate attendant had been so nice to me when I had gathered up my courage to ask if I could pre-board “because I know I look normal, but I have an invisible illness & I need a bit of extra time”.)
And finally a stickler of an employee of the bus service I used from Calgary to Lethbridge made me haul my large suitcase the entire length of the bus depot to go back to the main counter (I had just come from) to have my luggage weighed. It was not good enough that the airline had (begrudgingly) ignored my one pound of excess weight. When I arrived back at the departure gate gasping for breath, sweating profusely and barely being able to speak, she was gracious enough to pull my carry-on out to the bus. Gee, thanks lady. (I guess if that one extra pound would have been in my backpack it would be ok – it’s not like all my luggage is going on the same bus, right?!?!?)
None of these seemingly insignificant scolding’s would have ruffled my feathers except that I was already in extreme emotional distress, barely keeping myself together, and the tongue lashings just kept coming no matter where I went or what I did. I almost had a secondary breakdown just from people being so blindly rude to me.
All I could think of when on the receiving end of this belligerence was things like “if you knew how exhausted I was from lifting the luggage into the car this morning you would be amazed that I’m only 3 minutes late”. But how do you say something so random to someone in a passing exchange??
(For those readers who don’t know me personally – I make a very concerted effort to not share misery; so while being in the worst emotional state of my life, I was outwardly probably the most endearing I have ever been. I had had an IV treatment before I took off and while chatting with my doctor she told me I was so cute. People don’t normally say that to me, lol.)
The only time I was treated with patience and compassion was when I had plucked up the courage to say to a Gate attendant that I needed special consideration because I have an invisible illness.
Should I have to tell every stranger on my travels that I’m sick? No.
Do I have to tell every stranger on my travels that I’m sick in order to get treated compassionately? Apparently so.
I wish I would have spoken up about my illness to make my life easier during my travels but I was trying to run away from it! Not have it be at the forefront of everything I did!! I desperately needed a break from being sick! I wonder if I was in a wheelchair or using a walker would I have been treated kinder by those who were rude? My guess is yes.
Near the end of my travels I thought, I wish my t-shirt read “I have a debilitating illness and I’m having a tough day”. If people could know within 3 seconds of looking at me/my shirt that I was at a disadvantage, then maybe it would be the same as if I was using a walker.
I have a friend that makes graphic tees, so I have decided that I’ll ask him to make me some “travel” shirts. And I will wear these shirts without shame or embarrassment just so I can have some kind of outward sign that I am ill and may need help, or even just a little more understanding than most folks.
Here’s a (very rudimentary) concept of what I have in mind. Tell me your thoughts or ideas in the comment section below!