If you’re reading this blog, it means you’re one of the millions of people who have been diagnosed with something. Or you’re close to someone who has. This is never a fun process but there are some steps you can take to make it easier on yourself.
The moment of medical diagnosis, whether for something big or small, is a big deal. It’s usually because you have been feeling some way that wasn’t quite right. Occasionally it’s something your provider notices that you didn’t know was wrong. Either way, your perception of your physical self has changed. Your life will likely have to change with it through new medication, lifestyle changes, increased vigilance, a new device, surgical intervention, or other means.
Even if it’s terrible news, it can be a relief. Naming something helps us reassert our power after we have felt powerless. In deciding our treatment, we take back some of our control.
But it may take a while before you feel that way. First, there’s the fear. If it’s been a long slog full of providers who didn’t listen and rounds of tests that seemed to reveal nothing, you may feel numb. If it’s less of a slog but life-changing or -threatening you may be overwhelmed by grief and anger and a maelstrom of other emotions that will carry you through a reassessment of your own mortality. If you’re one of the numb ones, you will experience all of that when the numbness wears off. Lucky you.
Which brings me to . . .
Step One: Give yourself time. There are very few conditions, including the ones that could be terminal, that can’t stand an hour, a day, or even a week for you to take a step back and come to terms with your new reality. This could come in the form of self-care, sessions with a therapist, family/friend meetings, or whatever it takes to gather the strength you will need to enter this new stage on the right foot. If you aren’t kind to yourself in the beginning, you run the risk of falling into denial and rebellion, and there’s no benefit in starting out on a downward spiral. I did that with the diabetes, when I was too young to know better, and I’m still feeling the consequences.
Step Two: Do your research. There’s a lot of information available out there. Start with government sites and disease-specific associations. Find out what your markers are. Some take time as you get to know your body’s specific biorhythms, but others, like symptoms of flare-ups and how your lab test results will look when your condition is behaving (and when it’s not behaving), can help you develop goals for treatment.
Step Three: Ask questions. ‘Til the cows come home. Until you run out of breath. Until your head is swimming with new knowledge. Ask your providers as many questions, as many times as it takes for you to feel satisfied that you understand what is going on in your body and what courses of treatment are available, along with the pros and cons of each. The minute a provider says they don’t have time for all your questions is the minute you resolve to find another provider. Sometimes that’s difficult and time-consuming, but this is your life. I can’t trust a provider who doesn’t treat me like a human being when I’m the one with the condition. Can you?
Step Four: Find support. There are tons of disease-specific groups on social media. Sometimes they are backed by an industry or association, but sometimes they are simply people with similar conditions who have found each other. There are also in-person support groups. You can find them through local hospitals or your specialist (add this to your list of questions). These are the “run it by me” folks. In all likelihood, they have experienced the same hiccups, roadblocks, and side effects that you will eventually deal with. As with most things in life, if you can use someone else’s experience to lessen your own (figurative) headache, you should. Most people are happy to help.
This is also the place to find people who will listen to you vent without the need for a lot of explanation. All you have to do is state the problem. They will understand without having to be told how big or annoying it is. There really aren’t words to describe how valuable this will be.
The fear you feel with a new diagnosis comes from a lack of control and the possibility that you are not going to live as long or as well as you had expected. It’s powerful. Following the steps above can help steady you as you start down a new medical path.
But my steps aren’t the only steps. For those who have been through it, what have you found helpful? What have you found unhelpful? Please take a moment to share in our comments section so others may benefit from your experience.