They don’t know what’s wrong with me.
Let’s call it ‘the waiting room’… the medical grey zone that exists between discovering something is wrong and getting a conclusive diagnosis. It’s a period that can be marked by stress, anxiety, loneliness and frustration. Four women and a doctor share their stories with Stephanie Newman.
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“Two weeks ago I had my 46th surgery.” Teena lives with endometriosis, fibromyalgia, chronic back pain, sacroiliac joint dysfunction and chronic fatigue. “Despite all I have been through and the constant pain I am in, I always find a way to be grateful and positive about my situation and try and inspire others to do the same. Whilst living in pain sucks, I am alive.” Teena wants to help others see that having a chronic illness doesn’t mean you can’t have a full and happy life. She runs a business with her husband, makes content for her website and loves being a mum. “I firmly believe you have to make a choice to fight and be happy,” says Teena. “Everyone must go through the stages of accepting their diagnosis and understanding what it means for their life.”
Waiting room tip no. 1:
Accept things and choose the way forward.
Kerry was put on the pill when she was 15 due to very irregular periods. Then she started to get sick. “My doctor gave me migraine medication, but sometimes it wouldn’t work and I’d have to go to hospital and get a pethidine shot.” Despite terrible light sensitivity and nausea, her ex-husband accused her of faking her migraines. “I really had no immediate support. My family has never had them and used to say, ‘Oh, you’ve got a headache again’”. Some relief for Kerry came from meeting a friend who was also experiencing hormonal migraines. “We compared notes.”
Waiting room tip 2:
Find people who understand what you’re going through.
In early February, Elle-May suddenly found herself covered in large hives. They haven’t gone away. “I’ve been to my GP probably 15 times, had every possible blood test, seen a rheumatologist, and now in line to see an allergist.” The hardest thing, she says, is not knowing when it will stop. “In my worst moments it has given me panic attacks. I went to the hospital twice thinking I was having a heart attack.”
“Keep records of everything to help streamline processes,” says Elle-May. “Book to see your GP every week or two, and see a mental health professional if you want to discuss the struggle. Friends and family might want to help but they don’t know how.”
Waiting room tip 3:
Be as organised as you can.
Tan was 13 when her headaches and ovarian cysts appeared, followed by more headaches and migraines. Years later, she’s still dealing with ongoing complications, despite clear MRI and CT scans. “Friends tried to help… I missed many days of work,” she says. She’s now on a new medication and feeling slightly better, but her pre-period migraines are severe. Tan’s advice to others: “Accept help and don’t be embarrassed.”
Waiting room tip 4:
There’s no shame.
Tips for staying mentally healthy during a serious health event:
Don’t be afraid to share your worries and frustrations with others, be it family and friends or medical professionals.
Spend time with people who make you feel good and let them know how they can support you.
Join a support group to connect with others going through similar experiences.
Give yourself time to relax, through mindfulness and meditation, or just treating yourself to something you enjoy doing.
Maintain a balanced diet, sleep schedule and, if possible, get regular exercise.
Tips via Beyond Blue.
Dr. Sandra Hirowatari, chair of the Australian Medical Association Council of Rural Doctors, understands how and why patients become frustrated with the sometimes lengthy process of medical diagnosis and why they might want to give up on going to the doctor.
“What’s really important is to have a good relationship with your GP,” she says, admitting that this can be challenging in rural and regional areas without multiple medical practices. “Your relationship with your doctor is like a marriage: work hard at it, it’s a process. And it falls apart when there’s lack of communication. It’s okay to show your emotion, to tell your doctor that they’re not answering your question.”
Reaching the limits:
One of the hardest things for doctors is when a patient’s care reaches “the limits of medicine,” says Sandra, “for conditions like cluster migraines, we’re not in the right century for solving them. But what I say to patients is, ‘I can’t help you but I can be with you’.”
“I can acknowledge their pain. I tell them that they’re not going crazy, that this is true and real.”
One misconception, she says, is that a referral to a specialist is the GP giving up on a patient. “A referral is not giving up, it’s teamwork. One week after you’ve seen a specialist, go back to your GP and go over the results. Keep coming back until you’re satisfied.”
“If the person doesn’t come back, quite often that loop doesn’t get closed. For doctors, the absence of a person means that the person is fine.”
“And asking for a second opinion isn’t insulting,” she says. “I can see why they feel embarrassed because they’re saying that they don’t trust you. But the patient should be encouraged to ask for this if they want to. One of the things they shouldn’t do is give up.”
Sandra’s three tips for making the medical process work better for you:
Find a GP you can trust, and develop a good relationship with them.
Keep going back to your GP after seeing specialists.
Keep records of other medical visits in order to track your progress.
If reading this story raises any concerns for you, there are SO many excellent places you can go for free help.
Start with Lifeline for free and confidential info and advice: 13 11 14