Being there for someone who lives with illness of any kind isn’t always easy, and it can be especially hard, for you and for them, when symptoms return after a period of relative wellness or stability. (I’ve written previously here and elsewhere about managing the contrary situation, where a friend or loved one is doing well.) This is something several of my friends experience. Despite differences in their diagnoses, certain common themes keep coming up.
It helps me to remember that no matter how hard or scary things might be for me when a friend’s symptoms return, it’s far worse for the person living with it day to day.
Return or Relapse?
Some people might call this a relapse. I prefer to talk about someone finding themselves in a similar situation as before, or their symptoms appearing to have returned. Neither Fran nor I are qualified to diagnose a new episode of mania or depression, for example. That’s her clinician’s role. What I can do is pay attention to how Fran presents when I’m with her and how she describes what’s going on for her. I can discuss things with her, and help her through it as best I can.
The word relapse has a number of meanings depending on context, some of which carry connotations of moral failure, weakness, or judgment. Alongside the straightforward description of relapse as “a recurrence of symptoms of a disease after a period of improvement,” Merriam Webster offers an alternate definition, as “the act or an instance of backsliding, worsening, or subsiding.” Collins online dictionary says “[i]f a sick person relapses, their health suddenly gets worse after it had been improving.” I have no issues with that, but they offer a more judgmental alternative: “If you say that someone relapses into a way of behaving that is undesirable, you mean that they start to behave in that way again.”
Ultimately, calling it a relapse or a return of symptoms is a matter of preference. Nevertheless, the words we choose matter. Avoiding any hint of judgment is respectful and kind, not least because our friends may well be feeling guilt or shame, imagining they’ve done something wrong, or not taken enough care of themselves to prevent their symptoms returning.
What Symptoms Are We Talking About?
Not all symptoms of illness recur, but many do. Time and again, we find ourselves “back here again,” experiencing things we thought — or hoped — we’d recovered from or left behind us. These will vary from person to person. Those my friends experience include anxiety, depression, fatigue, insomnia, mania, pain, psychosis, self-harm, and suicidal thinking.
The frequency and intensity with which symptoms return varies from person to person but also from symptom to symptom and over time. Sometimes, these waves of recurrent illness overlap and exacerbate one another, as Fran describes in our book:
[it’s] amazing how i can be doing well for a while and then deteriorate so quickly for no apparent reason other than i have three illness that have a mind of their own and independently operate like sine waves..
Why Do They Keep Coming Back?
Understanding that there’s no simple or single reason for symptoms to come back helps counter the tendency to blame ourselves or our friends when they reappear.
Some conditions are inherently episodic or cyclical, such as bipolar disorder, seasonal affective disorder (SAD), or the stress and anxiety many people experience around family holidays such as Christmas or Thanksgiving. For many years, Fran experienced winter depression. She loves the potential offered by the summer months but finds the transition from spring to summer hard.
Some are situational, such as stress or anxiety related to work pressure; personal issues with family, friends, or colleagues; or other aspects of our lives and environment. We may be free of symptoms for long periods, only to have them return when the situations which trigger them present themselves again.
Symptoms may reappear as the result of changes in medication or treatment regimes, including starting or stopping a particular medication, or changing dosage. My friend and fellow mental health blogger Aimee Wilson has written about her experiences after one of her medications was inadvertently stopped by her pharmacist. Another friend experienced what appeared to be a moderately severe episode of depression. Her psychiatrist identified it as a side-effect of medication prescribed by a different doctor for an unrelated condition.
With some conditions, symptoms may return even after long periods of remission. Examples include cancer; pain from previous injury or conditions such as fibromyalgia; and fatigue, including chronic fatigue syndrome (CFS/ME). Other recurrences are random, or effectively so. These include symptoms triggered by factors outside our control or ability to anticipate or avoid. Such triggers include trauma, injury, sudden change, and the death of a family member, friend, or pet.
It’s worth noting that symptoms can arise in different ways at different times, even for the same person. In High Tide Low Tide: The Caring Friend’s Guide to Bipolar Disorder, Fran and I discuss several ways suicidal thinking presents itself for her, including relentless thinking, suicidal ideation triggered by situations and stress, and feelings of hopelessness and despair.
How Does it Feel?
Whatever their cause, nature, and intensity, when symptoms reappear it’s natural to feel low, frustrated, guilty, and even angry at being “back here again” despite all best efforts to keep ourselves safe, stable, and well.
I’m more used to helping friends handle these feelings than dealing with them myself. That said, in the past year or so I’ve had to accept that my baseline mood has shifted significantly downward, and I’m subject to recurring episodes of what I variously describe as flatness, low mood, or depression. In other words, this boy gets sad too. It’s not only my mental health. I’m currently experiencing intermittent fatigue after contracting covid a couple of months ago. It’s too early to know if this is going to persist, but it’s disconcerting to think it’s something I may need to factor into my life. The conversations I’ve had with Fran and other friends over the years about their situations are helping me feel my way forward.
What’s the Best Way to Help?
What’s the best way to help your friend handle the return of their symptoms after a period of relative wellness? The first thing I’d suggest is to encourage your friend to acknowledge what they’re feeling, whether that’s disappointment, frustration, anger, or hopelessness. Hold space for them to vent or talk about their feelings, if they want to. Acknowledge your feelings too, but avoid bringing judgment into the space you’re sharing with your friend.
Invite your friend to accept the unpleasant truth that recovery isn’t always guaranteed, may not be linear, and is often temporary. I use the word invite deliberately, because this isn’t an easy thing to accept. Fran lives with three episodic conditions — bipolar disorder, chronic fatigue syndrome (CFS/ME), and fibromyalgia. When she’s relatively well and stable, it’s hard for her — and for me — to accept that depression, mania, fatigue, and pain are almost guaranteed to reappear at some point. The only up-side I can offer when they do is that it’s equally certain the episode will not last forever. Things will change, because they always do.
It’s also true that no matter how much your friend may feel they’re “back here again,” things are not the same as on previous occasions. Their situation in life is different (not always better, but different). They have moved on from where they were last time. They have whatever lessons they’ve learned from previous episodes to help them through this one.
Our friend Julie A. Fast, author of books including Getting It Done When You’re Depressed, Take Charge of Bipolar Disorder, and Loving Someone With Bipolar Disorder, stresses the importance of treating the underlying health condition. Her mantra TREAT BIPOLAR FIRST is a reminder not to give up on whatever treatments, practices, and strategies we’ve put in place, including self-care. That doesn’t mean blindly following previous regimes if they’re no longer working. Where symptoms continue to reoccur or episodes increase in frequency or severity suggest your friend consults their clinician to see if a change in treatment is warranted.
Your friend may be reluctant to do so, especially if they’ve managed to achieve a degree of stability, because as we’ve discussed, changes in treatment can introduce new problems. These include side effects of the medication itself, and the potential to overshoot if the dose isn’t judged correctly. Fran experienced a massive overshoot from mania into depression when her medication was changed towards the end of 2011. She endured six months of debilitating depression before further changes in treatment brought a degree of stability and wellness.
Another friend who lives with bipolar disorder and chronic insomnia has had various changes to her treatment regime in the time I’ve known her. Despite often feeling frustrated and discouraged, she remains determined to explore her options in pursuit of mood stability and more healthy sleep patterns. As I remind her, this determination not to give up, and to keep moving forward is what courage looks like.
I help Fran remain vigilant for the return of symptoms, and potential trigger situations. It requires a high degree of trust and honesty. I get to share what I see in terms of Fran’s behaviour and flag any potential shifts into depression or mania to her, but it’s important not to overreact, and that I respect her take on what’s happening. That way, we each benefit from the other’s perspective. Fran gets to have a bad day (or several consecutive bad days) without it necessarily signifying she’s in depression. Likewise, she’s entitled to feel good without me raising the mania flag at the first sign of happiness. As I’ve written elsewhere:
We are both aware of the need for vigilance. Bipolar is like that. Any brightness, any momentary joy, each lifting of the curtain, is suspect, and may be the prelude to mania. But as I told Fran today: “You are doing well, and it feels wholesome to me. We will be vigilant. But don’t be scared to have a nice time, to smile, to find ease and enjoyment. These things are your right. You are worthy of them; of goodness, of living life fully.”
Sharing the responsibility for vigilance isn’t for everyone. I’ve offered to do the same for other friends and had my offer politely declined as unnecessary or inappropriate. That’s okay too.
A Final Note on Judgment and Kindness
I had a conversation recently with a friend about self-harm. My friend hasn’t self-harmed for a long time and cannot imagine herself being in that place again. Nevertheless, she said she’d never say it will never happen, only that she has developed more healthy coping strategies. I said I would never say that she — or anyone — had let themselves or me down if they self-harmed, no matter how long it had been since they last did. It wasn’t a throwaway comment on my part. It’s something I believe and know to be true.
Don’t get me wrong. I’m not immune to feelings of disappointment and judgment, but I recognise they’re profoundly unhelpful and say more about me than the person I’m thinking about. Whatever the situation, whether it’s the return of symptoms or the repeat of unhealthy behaviour, what is helpful, what is kind, is to allow my friends and loved ones to be where they are, including feeling ashamed or disappointed in themselves if that’s what they’re experiencing. That way I can be there for and with them, and help them find a way forward when they’re ready to take that step. Taking time to come to terms with what’s happening is an important part of that process. As I’ve described previously in a piece titled I Wasn’t Disappointed in You When:
I wasn’t disappointed in you. But maybe you were. And I didn’t honour that. I didn’t allow breathing space for that.
Over to You
In this article I’ve shared some of the ways I am there for my friends when they’re experiencing symptoms of illness again after a short or a long period of relative wellness. How do you feel about what I’ve shared? Does it resonate for you, or would you handle things differently? If you experience recurrent symptoms yourself, how do you handle it? What do you want and need from your friends and loved ones? How can others best help you move forward?
Fran and I would love to hear your thoughts, either in the comments below or through our contact page.
Photo by LinkedIn Sales Solutions at Unsplash.
