None of this is easy. Just getting tested for a serious medical ailment is scary stuff, then once you do that, there’s the horrible waiting period where your mind goes crazy with worst-case scenarios. If you actually get diagnosed with something, the hardships only continue: From coping with your new normal to telling your friends and family about your condition, every step comes with its own unique set of challenges, all of which come at you during a period where all you really want to do is curl up in bed and wake yourself up from this nightmare.
Of course, you can’t do that. While you can try to pace yourself, there’s likely a hundred things you need to take care of after a scary medical diagnosis and you can only delay things so much. To try to help you through it, we’ve developed this step-by-step guide, with help from doctors experienced in dealing with difficult diagnoses and survivors who have dealt with it themselves.
First of all, make sure you actually go get tested
If you know that you’re supposed to go in for a worrisome test, you really do have to go. Just pretending that everything is fine isn’t a solution, and the longer you wait, the more complicated your diagnosis can become. “If there’s something going on, it’s going on whether or not you’re ready to look at it or not. You can really benefit from finding out as soon as possible,” explains Gary McClain, a psychologist and founder of Just Got Diagnosed, a resource for those suffering from chronic conditions and life-threatening diagnoses.
How to get through that week of uncertainty
So, you’ve gotten that test, and now comes the dreadful waiting period. “That five to seven days are really the most difficult phase to go through,” says Maryann, who was diagnosed with breast cancer at age 43. While awaiting biopsy results, she was with family on vacation. She tried distracting herself but it was always in the back of her mind.
“Human beings don’t like uncertainty, we don’t do well with that,” McClain explains. He recommends that during this period, you try to “stay active in your life and do things you enjoy. Distract yourself.” He adds that it’s probably unrealistic to put it out of your mind, but healthy distractions, paired with talking about your fears to loved ones, will help. “Don’t be the strong, silent type,” he says. Reach out.
When getting the news, don’t go alone
Many times, results of these kinds of tests get told to you over the phone. Maryann got a call in the airport on her way back home from vacation, and she broke down right there. Fortunately, her sisters were with her to help her through it. In those situations, it’s important to lean on those nearby, or if you’re alone, call someone.
If you’re getting your results in a doctor’s visit, you really want to have someone go with you. If it’s bad news, you’ll need them there, and if it’s good news, they can celebrate with you. For Christine, who was diagnosed with breast cancer at age 42, she brought along her husband and her mother. “You definitely need to bring someone else with you because once you hear the word ‘cancer’ you don’t listen anymore. You cannot comprehend anything they’re saying so you need extra ears,” Christine says.
When getting any kind of scary medical results, radiation oncologist Wendy Woodward says, “It’s important to have support. The details are hard to focus on when you’re processing bad news. This can be hard though, as there are many appointments and lots of scans over time. If you know you will be on your own, consider letting someone know you could need support and have a friend or spouse on alert.”
Making decisions in the haze
“Oftentimes, patients are asked to start making decisions very soon,” McClain says, but to be sure you aren’t making rash decisions, Woodward says to “ask explicitly how fast this decision needs to be made and do everything you can to understand the urgency. From there, slow down as much as is safe.” Then use that time to come to grips with things and figure out what your options are. For Maryann, she immediately began asking others she knew who had gone through breast cancer what they’d done and what doctors they went to.
Normally, you’ll be able to take a little bit of time to clear your head, even if it’s just a week. During this time you may even want to seek out a second opinion, particularly when it comes to what treatment options you have. For Allison, who was diagnosed as being “terminal” with metastatic breast cancer at age 38, she was told by doctors to contact hospice. “That sent me into a deep depression,” Allison shares. “But I decided what I had to do was a get a second opinion, and when I did, they gave me hope.”
If you need to decide things in the moment, you’ll have to do what you can to clear your head. Ideally, you want to have another person there who can help talk things out with you. Also, ask as many questions of the doctor as possible: It’s a stressful time, and if you have to make snap decisions, utilize whatever supports you can to make the right ones.
Find the best
Among the most important things to do after a diagnosis is to figure out who the best possible person is in your area to treat your condition. For Veronica, who was diagnosed with thyroid cancer at age 41, she received her results from a local outpatient clinic who referred her to a local hospital, but she decided to go elsewhere. “At first, I was in such shock that I was just going to do whatever the doctor told me, but having worked at that hospital previously, I knew that they weren’t the best. When I returned to work a couple of days after my diagnosis, I reluctantly shared with my boss what was going on and she recommended that I go to Memorial Sloan Kettering Cancer Center. I decided to look into it and found out that they’re one of the leading thyroid cancer research hospitals. I thought that this was the right place for me, so I called the 800 number and they made it really easy.”
McClain says it’s extremely important to find the best people to treat you, sharing a story about a friend of his: “He told me that he was diagnosed with prostate cancer, and he said, ‘I found this really good doctor who treats all kinds of cancer.’ I replied by saying, ‘You don’t want him. You want someone who specializes in your kind of cancer.’ Treating all kinds of cancer isn’t a strength. You want someone who specializes.”
Coping with your ‘new normal’
Making sense of the world after your diagnosis won’t be easy. McClain says that many of his clients experience a grieving process over the life they thought they’d have. After the initial shock wears off, it’s likely that you’ll experience depression, anger, fear, anxiety and a host of other feelings.
Vanessa, who was diagnosed with multiple sclerosis at age 27, says, “I was very much in denial about the whole thing and just couldn’t deal with it. My son was just three months old, and I felt all of these self-pity kind of things like, ‘I’m disabled,’ and ‘There’s something wrong with me.’ I beat up on myself a lot.”
While she still struggles with feelings surrounding her diagnosis, Vanessa shares that she eventually learned to accept it a bit more, and now takes the necessary medications for her condition after putting it off for a long time. “You need to handle it in your own time,” she says. “You can’t just jump in because other people want you to. Now, being in denial for several years like me doesn’t make sense, but you can wallow for a little while. Eventually though, you’ll have to get on it and face reality.”
Christine also dealt with that “why me” feeling after her diagnosis, but she came to peace with it by finding purpose in her condition. “I started telling my friends. When telling the news to one of them, she shared that she had a lump, but wasn’t visiting the doctor until her routine check next month. I looked at her and said, ‘Maryann, you need to go home and call to get it checked out.’ Fortunately she did, because while that lump was benign, she did have breast cancer in another lump.”
“Had I not gone right away like Christine encouraged me, I wouldn’t have been diagnosed quickly enough,” Maryann says. Because of that incident, Christine says, “If I got cancer so that I could help others get through it, I’m okay with that.”
Another emotion people may deal with is shame, particularly when it comes to getting the news that you’ve acquired an STD. Sexual health doctor Joshua Gonzalez says that when he diagnoses a client with an STD, he tries to normalize it. “I try to give them the facts and explain that tests coming back positive is a common thing. It doesn’t mean they did anything wrong,” Gonzalez says. For HIV in particular, he explains that there have been great strides in the past 20 years and that many people live their lives with it as a chronic medical condition. He lets people know that it’s not the death sentence it once was.
Whatever emotions you’re experiencing, don’t try to ignore them or go through them alone. Lean on those you trust, go to therapy or join a support group. Without other people to talk to and learn from, it will be hard to stay positive — and positivity is key to your progress.
Researching and understanding your condition is another useful way to come to terms with it. “Don’t start reading scary medical blogs,” McClain warns. “Start getting information and ask your doctor for information.” As for online research, stick with reputable “.org’s” like the American Diabetes Association, the American Cancer Society or whatever highly respected group leads the way on your own condition. By learning about it, it might help you understand its severity while also not causing unreasonable fears.
How to tell friends and family
“Telling other people was the hardest part for me,” says Allison, who prepared scripts to tell others the news. As she found out the news when she was home alone, she told her husband when he got home from work by asking him to sit down, then she shared what the doctors told her and cried with him. Soon after, she told her immediate family. “My dad was first, and I delegated to him telling my aunts and uncles because it was too much to call every person. I was nervous about telling my mom, so my brother came with me to tell her. Then I told my closest friends,” Allison says.
Allison did her best to deliver the news matter-of-factly. “I didn’t want to become super emotional. I wanted to tell them that I wasn’t beaten down by it and that I had hope and that I felt strong. While I did make it clear that there wasn’t a cure for my condition, I didn’t use the word ‘terminal’ because if you hear that, people freak out. I used the word metastatic to describe my condition to make it clear that it was throughout my body. Yeah, it’s terminal, but that means something different for everybody. Eventually, I will die from this, but it doesn’t mean it will be tomorrow.”
She also utilized humor. She says her favorite joke to tell people is, “How do you get bubble gum out of your hair? Chemo.”
McClain says that telling others is one of the few parts of this whole thing that’s within your control, so when selecting people to reach out to, make sure you select people who won’t judge you. For example, if you’re diagnosed with diabetes, you don’t have to tell that person in your family who you know will ask, “Why didn’t you take better care of yourself?” Or if you’re diagnosed with an STD, you don’t have to tell those who will shame you for it. But do reach out — you need a support network.
Depending on your personality, you may be entirely comfortable with it becoming public knowledge. “I told everyone,” says Christine, explaining that she’s very social and didn’t want to keep things from people. Concealing something about herself wasn’t in her nature, so telling everyone just seemed easier.
Delivering the news to children will vary wildly depending upon their age and maturity level. Veronica, a school social worker and child therapist, says, “You don’t want to bullshit a kid. You want to be truthful with them, but cater the news to their level of understanding and be mindful that you’re not telling them in a stressful setting.”
For Allison, she told her young son — who was just four when she got the news — that she has “boo-boos on the inside,” and that the boo-boos can make her very tired. Maryann says that she told her second grade son, “This is what mommy has to go through. I’m okay, but I’m going to have to deal with it for a while.”
What to do about social media
This totally depends on the person and their relationship with social networks. McClain says to be cautious about what you disclose online, as future employers may see it. He says too that you should be aware that everyone may not be supportive and that a lot of people may try to tell you what to do.
On the other hand, reaching out publicly may provide you with a wide network of support and remind you just how many people care about you. Such was the case for Veronica, who shares, “Being in a helping profession, I usually have a very hard time asking others for help. After having told close family via text, I didn’t tell anyone else until my first appointment at Sloan Kettering. When I arrived, I casually ‘checked in’ there on Facebook like someone might check into a Starbucks. From that, I received a huge outpouring of support from people and it really helped me feel stronger.”
What to do about work
Work can be a tricky one. While you can probably tell close colleagues in the same manner that you would a friend, unless you’re extra sure that they won’t say anything, expect your diagnosis to become part of the the office rumor mill. If your condition is one that may alter your appearance, yet you’re not the type to tell everybody, McClain suggests that you say something like, “I’m getting some medical treatment. I may not look or feel good, but I want to let you know that I’m hanging in there and taking care of myself.”
Vanessa, who is a HR director, says, “When your condition starts to affect work, you should understand that sometimes it requires a little more information if you’re calling out all the time. If no one knows what you’re going through, it may not be understood. Also, depending on your situation, you may qualify for disability or FMLA or other job protections and benefits that may help you through this time.”
At the very least, Vanessa says, telling HR is probably wise because they can coordinate with your supervisor around your situation. This should help to protect you if your condition requires a lot of appointments or days where you need to call out.
Don’t let it define you
Whatever your condition or diagnosis — or even time left on this planet — you shouldn’t let your illness define who you are. “Think about how you’re still a multi-dimensional human being and this is just one more piece of information about you,” says McClain. “It doesn’t have to define you. You’re still the person you’ve always been. You just have this challenge.” While you may have to make modifications to your activities or adjustments to your future plans, he encourages people to do things they love, explore hobbies and reach out to people they care about.
“I don’t want it to define me,” says Allison. “That’s one of the biggest things for me. I don’t want to be known for having cancer. I want to leave a positive legacy and not this ‘poor me’ kind of thing. I want to be known for being a fighter and living my life to the fullest despite what I’m going through.”