Whenever you reach a new, uncertain stage in life, it can help to have someone to guide you through. The same is true with a new SPMS diagnosis. We reached out to Kevin Alschuler, Ph.D., psychology director at the UW Medicine Multiple Sclerosis Center in Seattle for some advice on to handle those difficult emotions.
When MS has progressed to secondary progressive (SPMS), what emotional changes do you see in people?
We see the whole spectrum of emotional and physical symptoms in our patients. With SPMS, you are likely to experience more symptoms, often of greater severity, than when you were first diagnosed with MS. Also, being told you have SPMS serves as a more definitive marker for you that your MS has advanced and often brings with it new or different expectations.
How do most people deal with the transition from RRMS to SPMS?
We have more treatment options for SPMS than we did not that long ago. A few years back, SPMS patients often expressed a sense of loss of the little bit of control they had, as the change in diagnosis meant there were no more treatment options. Now there are some, and this has helped, especially for people who like to have a sense of control. Also, people with SPMS have more experience living with MS and are often equipped with more skills for coping with the disease, because they’ve experienced MS challenges before.
Is anxiety a bigger issue than depression for people with SPMS?
We know that both anxiety and depression are more common in people living with any type of MS—not just SPMS—than in the general population. Much more attention has been paid to depression than anxiety in MS, but recent research suggests that anxiety may be as common or even more common.
Do you approach psychological treatment differently when someone has SPMS?
In terms of SPMS, I find that the issues our patients present with do not differ much relative to those of RRMS. But SPMS does have its nuances, most notably the adjustment to the implications of meeting the criteria for this more advanced form of the condition.
What do you suggest in terms of mental health support?
Most large MS centers have mental-health care available, and I would encourage patients to use those resources. If you receive care outside of these centers, you can work with your providers to identify good local mental-health practitioners who have experience working with people with MS or similar chronic illnesses. Support doesn’t have to come from a psychologist or other mental-health provider. The National Multiple Sclerosis Society has a ton of support groups and educational programs, some of which are for anyone with MS and others that are tailored to specific patient characteristics. Similarly, the organization Can Do MS runs wonderful programs that empower patients to live their best lives with MS. The important thing is that you find a type of support that is fitting for your needs.
At what point do you recommend that people with MS reach out for psychological help?
People often look for help from psychologists only when they are really struggling. But if you reach out early, we have the opportunity to help you get on a better path sooner. As a psychologist, I am motivated to help you as soon as possible to ensure that you have the coping strategies you need as you progress through life with MS.
See more helpful articles:
SPMS: What the Four Letters Mean for You
In an SPMS Cog Fog?
"You Were Probably SPMS From the Beginning"