One of the biggest hurdles to the treatment of chronic illnesses such as lupus, is the fact that the physical symptoms for lupus can also be the symptoms for arthritis, MS, fibromyalgia or a host of other diseases. So while today’s Awesome Person is not a lupus patient, she’s a sister in dealing with chronic ickyness.
Name: Ania Bula
Born: Saskatoon, Saskatchewan
Now Living: Ottawa, Ontario
1) Now I understand that you don’t have lupus, but that you have Crohn’s disease and arthritis. What symptoms led up to your diagnosis?
In the case of the arthritis, it was a sharp sudden pain in my back that made it impossible to walk. It only lasted a weekend, but ended up with me getting a CT scan that showed swelling in the SI joint. More interesting in terms of the arthritis was what it took to get the doctors to realize that I needed more aggressive treatment. It took a year of pain, that ended up with me being unable to walk.
With the Crohn’s: I lost 60 lbs in about 2 months, stopped being able to keep food down, severe abdominal pain and ended up with a fistula that had to be surgically operated on.
2) What have been the main day-to-day symptoms that you’ve experienced?
Pain and nausea are pretty frequent visitors, not to mention exhaustion. Some days, I can’t even smell food without having to lie down and hope that I won’t throw up.
3) I understand that you’re in the process of writing a book about your experiences being diagnosed and some of the various treatments you’ve tried – can you tell us more about it?
I went through an incredible process of trying to get treated. I went through a year of having to use a case to drag myself from place to place. I felt as though my leg was going to shatter beneath me. Despite the state I was in, doctors basically ignored me for a year until finally I had to give up and go back to my parents’ place. With the Crohn’s it has been a real process to try and get into remission. I recently had to quit my job because I couldn’t keep up the energy for it.
There are a unique set of challenges that you face when you have an invisible disability. There isn’t something obvious that you can point to to help explain some of the things you have to do for your health. People have a hard time understanding why you cannot go to as many of their events as you would like.
I am hoping for two things with this book:
The first is that I am hoping to give people without disabilities some insight into what their friends and family might be going through. Perhaps some clues into why some things happen. Along the same lines, I want to give people with those disabilities a clear idea that they are not alone. That, although the specifics might differ, that there are other people out there who know what it is like to have to face down exhaustion, pain, etc.
The second goal is to give a face to the victims of alternative treatment. When we talk about how they are “taking advantage” of sick people, we do so very academically, but there is always some sense of disdain for the people who get roped into these treatments. A feeling of, they should have known better. I want to show just how much severe pain can affect your ability to think. How desperation sometimes overrides skepticism and good judgement.
The actual book itself will be a retelling of my story and experiences, of what I went through, interspersed with observations and lessons that came out of the whole process.
4) As a lupus patient, I’ve had my fair share of weird “treatment” options – what were some of your most memorable ones?
I want to leave some surprises for the book, but I can mention 2 that stick out in my mind.
The first is the faith healer who was basically coping a feel in front of my mother, while praying fervently for me to be healed. I was almost in more pain from trying not to laugh.
The second is a friend who suggested that drinking green water would help me keep my Crohn’s symptoms under control. It looks and tastes like swamp water, and ended up with me spending the night in the washroom being sick as a dog.
5) Were there any positive experiences you can mention?
There were lots actually. It is easy to forget the good aspects of going through something like this. One of the most positive experiences was learning the strength I am capable of and also learning that there are legitimately good people in this world.
When I was in the hospital one of the first time’s going in, I had a very kind and knowledgeable nurse who pulled me aside and showed me exactly what was going on. She was the only one to give me an answer and it kept me going in later times.
Once, during a flare, I was throwing up at an intersection. When I woman pulled over, I thought she was going to yell at me (which sometimes happens) but instead she was actually just concerned and wanted to know if I needed help or if she should call an ambulance. I was very touched that she went out of her way to help me.
6) What do you see as the biggest problem for patients looking for treatments or alternatives to the sometimes harsh side effects of medication?
I think one of the biggest problems is lack of education and a fear of mainstream science. We are constantly bombarded with horror stories about big pharma, and then in swoop in these con artists that use words like “natural” and trick people into believing them. The truth is that while yes, pharmaceutical companies are out to make a buck, they are also doing legitimate research. They have a lot of standards in place to make sure medicine you are getting is safe and effective. Regulations that don’t apply to alternative med providers, who in reality are much greedier than pharmaceutical companies could ever be.
Side effects can be terrible – I remember my own experiences with chemotherapy for example – but the medicine provided has been tested and shown to work. We need to rebuild trust in science and evidence, to help patients make the right decisions for their treatment. We also need people to become aware that something that has the key word “natural” or “traditional” is neither guaranteed safe nor effective. Critical thinking in treatment is key.
We also need to help patients learn about self-advocacy. That was a difficult process for me to learn as well. If your side effects are really bad, you have a right to talk to your doctor and see about changing treatments or dosage. Doctors also have access to information on how to help mitigate side effects, but they don’t know to help you with that unless they know you have those symptoms. What your doctor doesn’t know about, he can’t help you with.
7) What last bit of advice do you have for other people with chronic illnesses?
Don’t be afraid to talk about it with others and don’t be afraid to do your own research. Become an expert about your condition, because ultimately you know yourself more than anyone else. If you know what sets off symptoms, if you know which chemicals you react to well or badly, you can have a more active role in helping chose your treatment and care. If your doctor doesn’t listen to you, change doctors! Don’t put up with substandard care. If you can’t change doctors, come back at them with evidence. Bring in studies that support what you say. Also, if you find information about interesting clinical trials or research done, share it with your doctor. They might not have heard of it, or they might be able to get you more information about it.
As for talking about your chronic conditions, it can be difficult. We all have a reflex towards privacy, but sometimes that reflex can be damaging. Our family and friends don’t know and can’t know what we are going through unless we tell them. Sometimes a conversation can mean the difference between having to put up with frustrating behavior and understanding.
Note: Ania is running a crowdfunding campaign to help fund her book Young, Sick and Invisible: A Skeptic’s Journey With Chronic Illness. You can donate by visiting her funding page at Indiegogo.com. The last day to donate is March 19, so don’t delay! After the 19th, you can still donate through her blog.